Henry B. Betts LIFE Center Patient and Family Education Resources

Learning, Innovation, Family, Empowerment (LIFE) Center: a multimedia education center and website for patients, families, and friends. All resources have been reviewed by our experts in order to provide sources of help in key areas of life.

This guide provides a starter set of resources that apply to most conditions. For additional resources, visit the Henry B. Betts LIFE Center patient education online at https://www.sralab.org/lifecenter/binder. 2017 1

TABLE OF CONTENTS

FOR MORE PATIENT EDUCATION, VISIT THE HENRY B. BETTS LIFE CENTER WEBSITE: https://www.sralab.org/lifecenter/binder

BLADDER CARE Urinary System Overview Urinary Tract Infections BOWEL CARE Bowel System – Understanding the Digestive System Bowel System – Common Problems CAREGIVING Caregiver Stress Management Hiring a Caregiver Caregiving Agencies – Nationwide National Caregiver Organizations Networking Sites for Patients and Caregivers CONDITION INFORMATION Complications: Deep Vein Thrombosis (DVT) Complications: Swelling or Edema and Contractures Pain: Medications for Pain Relief Pain: Peripheral Neurogenic Pain (Nerve Pain)

This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

Pain: Non-Drug Pain Management Techniques Personal Health Record – Create Your Own Physical Deconditioning EDUCATION AND EMPLOYMENT Vocational Rehabilitation Services EQUIPMENT Emergency Call Systems Assistive Technology Center EXERCISE AND MOBILITY Home Exercise Program (PT and OT) Master List Proper Body Mechanics FINANCE Paying for Home Care Social Security Disability Benefit Overview HOUSING Adapting a Home for Wheelchair Accessibility Home Assessment – Short Form Home Modifications and Funding Options INSPIRATION AND HOPE Pastoral Care at Shirley Ryan AbilityLab LAW Advance Care Planning Americans with Disabilities Act (ADA): Summary NUTRITION Nutrition Overview This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

PREVENTION Home Safety Tips Preventing Falls in the Hospital Preventing Fatigue at Home and at Work RECREATION AND LEISURE Accessing Your Community Expanding Your Social Network Making the Most of Your Free Time Recreation Programs – Nationwide Adaptive Sports and Fitness Program Special Recreation Associations of Illinois Therapeutic Recreation Services for Inpatients REHABILITATION SERVICES Adjusting to an Inpatient Rehab Hospital Inpatient Rehab: Description of Rehab Roles RESPIRATORY CARE Respiratory System and Care Vaccine Overview: PPV (from CDC) SEXUALITY AND REPRODUCTION Sexual Health - Overview SKIN CARE Skin Care Overview Skin Care: Common Problems Skin Care: Preventing Pressure Injuries SPEECH AND HEARING This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

Role of the Speech Language Pathologist SUPPORT AND WELLNESS Health and Wellness Health and Wellness on a Continuum Being Your Own Advocate Caregiver Support Groups – Chicago Area Illinois Network of Centers for Independent Living Independent Living Centers Directory – National Shirley Ryan AbilityLab Peer Visitor Program Spiritual Care at Shirley Ryan AbilityLab Straight Talk about Disability Tips When Visiting Someone with a Disability TRANSPORTATION Association for Driver Rehabilitation Specialists Disability Parking Placard and License Plates Driving Following an Injury or Disability

Driver Rehab Programs near Chicago

BLADDER CARE Urinary System Overview Author: Shirley Ryan AbilityLab Nursing Practice Council After a disabling event, it is common for bladder habits to change. Some people have problems emptying the bladder, while others may have urinary accidents. The first step in learning to deal with these changes is to learn how the urinary (bladder) system works. These are some common urinary terms: Bladder - balloon-like muscle that holds urine Kidneys - organs that filter blood and remove waste Ureters - thin tubes that drain urine from the kidneys to the bladder Urethra - tube that drains urine from the bladder to the outside of the body Sphincter - muscle between the bladder and the urethra Normal Bladder Function and Urination There are two kidneys, one on each side toward the back just below the ribs. The kidneys remove waste from the blood and turn it into urine. Once urine is made, it moves through the ureters and then into the bladder where it is stored. To keep urine from leaking out, the bladder wall stretches like a balloon and the sphincter muscle at the bottom of the bladder tightens. When enough pressure builds up, a message is sent from the bladder to the brain. The brain then signals the bladder to hold it a little longer; or a reflex causes the bladder walls to tighten and the sphincter muscle to relax. Then, the pressure pushes urine down through the urethra and out of the body. Effects of Disability on the Bladder A disability may affect the bladder in these ways: Incontinence - Accidental loss of urine Urinary frequency - Needing to urinate more than once every two hours Urinary retention - Inability to empty bladder completely; increases risk of infection. Dysuria - Problems starting the urine stream or pain during urination. Urinary urgency - Very sudden need to empty the bladder Bladder Program This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

A good way to deal with bladder problems is to develop a routine called a bladder or toileting program which includes the following: Drinking plenty of fluids, spaced throughout the day. It is alright to drink less after dinner to avoid urinating often at night. For some people, emptying the bladder completely is difficult and a catheter can be used to drain urine from the bladder. Intermittent catheterization is the process of passing a tube through the urethra into the bladder at certain times in order to drain the urine. Indwelling catheterization leaves the tube in place to drain urine all day. Those using a catheter are taught how to use it by a healthcare professional. This includes care of the catheter; transferring on and off the toilet seat; and managing clothes and hygiene. People with communication difficulties are taught how to alert others of the need to use the bathroom. Family communication is often another important part of urinary care. Although bladder changes can be very embarrassing, it is important to talk about them with family. Honest communication will make rehabilitation easier for you and your family. Bladder Management Options

Things to Management Description Advantages Disadvantages Consider

Timed voiding Urinating at set No risk for None If bladder empties (Most often used in intervals to avoid infection well and can hold stroke care) accidents and urine for a retrain bladder reasonable amount of time

Urinating without Urine that empties Low risk of Wearing an Good option for control without control and infection Requires external collecting men if bladder is managed by a very little time device May cause only; not for collecting device or skin problems women as there is pad no collecting device other than a pad or diaper

Intermittent Emptying the Less chance of Need to catheterize Best for those who catheterization bladder at specified infection, if around the clock; are independent in without urination intervals using a followed as waking at night their care catheter prescribed No need Intake of fluids Greater to wear external may need to be commitment to limited to keep the follow program

collecting device bladder from guidelines, such as Lower cost overfilling limiting fluids, using catheter at least every six hours

Intermittent Emptying the Less chance of May need to Not appropriate for catheterization with bladder at specified infection catheterize at night females due to lack urination intervals using a No need to limit Requires external of effective catheter; frequency fluids collecting device external collecting depends on how device well the bladder empties with urination

Indwelling catheter Hollow tube from None Greater chance of Optimally, used bladder attaches to infection short term a bag worn on the Males may develop leg or hung on the sores in the urethra side of the bed Could interfere with sexual intercourse (there are ways to handle this) Need to wear a leg bag or night drainage bag at all times

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Urinary Tract Infections Author: Shirley Ryan AbilityLab – Nursing Practice Council Urinary tract infections are a common complication for people with a disability who require catheterization (insertion of a tube to drain the bladder).

Causes •Overfilled bladder •High residual urine (amount of urine left in bladder) •Poor cleaning before catheterization •Poor hygiene

Signs and Symptoms •Cloudy, bloody or smelly urine •Sudden increase in residual urine •Increase in spasms •Pain or burning feeling during urination •Fever and chills

Prevention •Drink at least two quarts of fluid daily, unless your doctor has instructed you on fluid restriction. Choose from a variety of fluids such as juice, milk, tea and water. •Always wash hands thoroughly before and after touching the catheter. •Wash the area between the legs at least twice a day, especially the area around the catheter. •If using a drainage device, make sure the tubing is not bent or plugged so that the urine moves through freely. •Empty the bladder regularly; try to keep volume at 400 ml or less, or according to instructions given by your doctor. •If instructed, monitor residual urine to prevent infection. •Call your doctor immediately if you have any problems.

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BOWEL CARE Bowel System -- Understanding the Digestive Process Author: Shirley Ryan AbilityLab Nursing Practice Council People with disabilities often experience a change in bowel patterns. Some individuals have problems moving their bowels, while others have accidental bowel movements. Understanding how the digestive system works can help with adjusting to bowel changes.

When eating, the food that is swallowed goes first into the esophagus and then into the stomach. Enzymes (digestive chemicals in the stomach) break down the food. Next, food travels from the stomach into the small intestine, then on to the large intestine, or bowel. During this time, the body absorbs nutrients and fluids and uses them for energy. Food that is not needed for energy becomes solid waste, called stool. Stool passes through the bowel into the rectum, resulting in a feeling that it is time to have a bowel movement (BM).

Gastrointestinal Terms

Bowel: Intestinal area which processes solid waste

Bowel program: Habit that has been created to empty bowels at a certain time, prevent accidents and promote regular bowel movements

Defecation: Passage of solid waste (stool) out of the body.

Peristalsis: Wave-like action in the bowel which helps stool move out of the body

Rectal check: Inserting a gloved, lubricated finger into the rectum to check for stool. (Not appropriate for stroke patients. Please consult health care provider.)

Rectum: Lowest part of the bowel

Sphincter: Muscle surrounding and closing the rectum

Stool: Waste that has passed through the bowel

Bowel Changes after a Disability Bowel changes occur after a disability for several reasons:

• Decreased activity and immobility slow the movement of stool through the body. • Nerve damage can interfere with the ability to feel when a bowel movement is about to happen, and This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

10 with the ability to stop and start a bowel movement. • Muscle weakness or paralysis of certain parts of the body can make it hard to manage clothing. • Cognitive (thinking) problems can keep the brain from knowing that it is time for a bowel movement. • Speech problems make it hard for a person to ask others for help to go to the bathroom. • Prescription drugs (such as pain medications), over the counter medicines, supplements, and diet affect bowel patterns.

Image: © Medical Illustrations Company. Reproduced under license.

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Bowel System: Common Problems Author: Shirley Ryan AbilityLab Nursing Practice Council Listed below are common bowel problems, symptoms and management techniques.

Constipation – the inability to have a bowel movement for three or more days. Symptoms • hard stools • inability to have a bowel movement in many days • feeling bloated in the stomach area

Causes • Insufficient fluid intake (less than one liter per day) • Inactivity • Poor diet – low in fiber–containing foods such as fruit, vegetables and whole grains • Side effects of medicines – especially iron, codeine and pain medication • Repeatedly ignoring urge to move bowels.

Treatment • Drink at least six to eight glasses of fluid each day. • Eat a diet high in fiber. • Ask the doctor about using a stool softener or laxative. • If constipation persists, ask your doctor about using suppositories or an enema. • Any person with a spinal cord injury who experiences the above symptoms along with abdominal pain that does not go away after removal of the stool should contact their physician immediately. This may be a sign of autonomic dysreflexia, a serious condition of over activity of the nervous system. Autonomic dysreflexia can happen to people who have injuries at or above T6.

Impaction – hard stool plugging the rectum Symptoms • Hard stools • Bloated feeling in the stomach • Leaking of loose or liquid stool

Causes • Insufficient fluid intake • Inactivity • Poor diet • Side effect of medications • Chronic constipation

Treatment Many people who experience impactions are able to remove the stool by hand. Check with your physician or health care provider to find out if this is appropriate.

Diarrhea – loose or liquid stool, usually three or more times a day. Symptom • Large amounts of loose or watery stool This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

Causes • Illness, such as a cold or flu • Poor diet, including too much spicy or greasy food • Excessive use of laxatives or stool softeners

Treatment • Do a rectal check looking for impaction. • Check with your health care provider regarding the use of specific fiber supplements. • Stop all laxatives and stool softeners. • Drink plenty of fluids.

Hemorrhoids – swelling or bleeding of tissue around the rectum Symptoms • Red, bulging areas inside or outside the rectum • Pain or rectal bleeding after a bowel movement

Causes • Long history of hard stools or constipation • Removal of stool by hand

Treatment • Use medications ordered by doctor such as Anusol™ or Preparation H™. • If stool is hard, follow guidelines for constipation (above). • Drink plenty of liquids.

Incontinence – problems controlling bowel movements Symptoms • Inability to start or stop bowel movements • Lack of awareness of bowel movements

Causes • Decreased mobility • Inability to communicate the need to use the toilet • Side effects of medication • Uncontrolled diarrhea

Treatment • Assess bowel habits to find a pattern. Some people have bowel movements every day; others have bowel movements every two or three days. Try to anticipate when a bowel movement might occur and sit on the toilet at that time. • Sit on the toilet after eating for 30 minutes up to an hour.

• Avoid using a bed pan as much as possible; use the toilet or a commode. • Check with your health care provider about using suppositories to regulate bowel movements. Return to Top

CAREGIVING Caregiver Stress Management – Talking Care of Yourself Author: Elizabeth Wojciechowski, PhD, RN A disability often occurs suddenly and can change your whole world, creating a lot of stress. There are medical issues and questions about the future. There are physical and emotional demands. The person who has been injured or disabled will often require special care. Caring for a person with a disability can be very rewarding but also very hard.

The term ”caregiver stress” is used to show that caring for someone with a disability is physically and emotionally difficult. It is normal for caregivers to feel anger, guilt, depression, loneliness, anxiety and fatigue and to have these questions: •Can I really do this? •Am I doing enough (too much)? •Can I physically handle this? •How will I ever learn all of the care tasks? •Am I neglecting others in my family? •Will I be able to take care of myself too?

This last question is very important; if you do not take care of yourself, you will not be able to care for someone else. Meeting your needs and the needs of another person is tricky. When the balance tips and your stress is too much, there can be negative effects. Many times, caregivers wait too long before admitting their own exhaustion. Ongoing caregiver stress can lead to irritability, and even abuse or neglect of your family member. It is important to watch for these signs early on and address them before the situation worsens.

Signs of caregiver stress: •Changes in sleep or eating patterns •Being moody and irritable •Using medicines or alcohol to ”relax” •New or recurring medical problems •Chronic fatigue •Rough handling of the person with the disability

Tips for coping This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

There are no easy answers, but sometimes even these small things can help: •Ask others for help. Look beyond those old beliefs that asking for a favor is a sign of weakness or that others should know when and how to help. •Communicate openly and clearly with the person being cared for. Remember that person with a disability has a right to make decisions and do things, as their health situation permits. •Accept that sometimes your own needs come first. You can provide care only as well as you care for yourself. •Plan time to rest, relax, have fun and exercise. Time away doing something different is important to your personal well being. This could happen regularly in small ways, like a phone call to a friend, a relaxing bath, or a walk outdoors; and sometimes in a more special way, like a night out with friends, or even a vacation where someone else takes over caregiving tasks. •Allow yourself to say “no” when necessary. Only so much can be done in a 24–hour day. Recognizing and setting limits can strengthen your spirit and inspire you to move forward. •Give yourself credit and a pat on the back, regularly. •Look for sources of support such as someone to help you get out for a while, someone to help at home, or someone to just listen. You may find comfort from a clergyman, friends, or a support group for caregivers. You are not alone.

You will often feel as if you are not doing a good job of taking care of your loved one when you do something to take care of yourself. Following these new suggestions will be difficult. Just like caring for your family member takes work, caring for yourself takes work too.

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Hiring a Caregiver Author: Kristine C. Cichowski, MS It is natural to be worried and overwhelmed at first when needing to hire someone for help with personal care. This is no small task; it will affect your day to day life. Try to keep in mind that you have options and can find someone who is right. This document will help guide you and answer the questions: Where do I start? What do I ask? How will I know if someone will provide what is needed? To make the hiring process as easy and smooth as possible, it is important to first think about what is needed and what you are looking for. This is true whether searching for someone before leaving the

15 hospital or at another point in time. Understanding what needs to be done will also simplify the questions to ask each person being considered for the job. Creating a realistic picture of the situation will help with finding the caregiver whose background, skills and personality meet the needs of the individual who requires care. For anyone currently in the hospital, the rehabilitation treatment team can assess the type of care needed at home and can also train a caregiver before discharge. Start by identifying what type of help is needed by using the checklist that follows. This list can also serve as a job description for the caregiver. Once the jobs have been identified, the process of finding a caregiver can start. Generally people use a home health care agency, caregiving agency, employment agency or find a caregiver on their own. Below is a description of each option and information to help with making a choice.

Personal Care Household Tasks Activities

Home Shopping for groceries/household items Getting in & out of bed Meal preparation Personal Walking or pushing a wheelchair Dish washing Doing home exercises Using stairs Making or changing the bed Picking up medicines Dressing Laundry Medical appointments Bathing Vacuuming/Dusting Errands Brushing teeth, shaving, hair care, makeup Cleaning bathroom Social Using the toilet or other bladder or Washing floors Recreation activities bowel care Taking out garbage Visiting friends Eating Lawn or yard work Going Out Taking Medications Snow shoveling Outings Other home medical care______Other ______Religious services Driving to family events Other ______

Using a Home Health Care Agency Agencies often focus on providing skilled care, but may also have non-skilled workers such as companions and homemakers available. Skilled care includes services of certified and licensed professionals, such as registered nurses or occupational therapists. Skilled care may be necessary for someone with specific medical needs. Non-skilled care includes assistance with activities of daily living, such as dressing, bathing, eating and household chores. It may also include providing supervision for safety. Caregiving agencies employ people who are trained to provide these services. Advantages If the caregiver is unable to work, the agency arranges a substitute. Payment is made to the agency. The agency pays the caregiver and assumes responsibility for withholding taxes. Disadvantages Strict guidelines determine which tasks can be performed by caregivers. For example only a licensed nurse is allowed to perform catheterizations, injections or tracheostomy care. Greater cost – there are both caregiver and agency fees.

Using an Employment Agency Advantages Agencies select prospective non-skilled caregivers and schedule interviews. You become the employer; the agency is not responsible for any supervision. Disadvantages Staff may not necessarily be specialized in personal care. Some employees may not speak English. A fee, usually equal to one week’s salary, is charged to the employer. This fee is nonrefundable, but the agency should replace a worker for no additional fee if you are not satisfied.

Hiring a Caregiver on Your Own To begin a search, think about talking to friends or neighbors who may have used a caregiver. Also consider placing an ad in your community: This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

Neighborhood newspapers Ethnic newspapers Church newsletters Community or neighborhood clubs Hospital bulletin boards (Nursing and medical school students may already have some care experience and be willing to exchange care for room and board.) Grocery stores Area Independent Living Agency College newspapers, bulletin boards and placement offices Advantages Costs may be lower You determine if the person is suited for the job. Job expectations can be set individually. Caregiver can be trained to do tasks the way you want them done. Disadvantages May take more time to find the best person. There is no backup if the caregiver becomes sick or is unable to work.

Interviewing & Finding the Right Person After identifying potential caregivers, the next steps are to conduct interviews and check references. Interviewing Caregivers Use the same questions with each person so that you can make comparisons. During the interview ask about: Previous caregiving experience including length of employment at each job and reason for leaving. Avoid anyone who quit a number of jobs because employers were considered mean or unreasonable. This may indicate a problem with authority. Reasons for wanting the job. Openness to take direction. Avoid those who "know best." Available, reliable transportation. This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

Other responsibilities that may interfere with work, such as classes, family obligations or a second job. This does not need to disqualify someone as long as your hours are flexible. Overall health status and the ability to perform heavy lifting or other required care.

Checking References Part of the hiring process includes calling previous employers. You can verify the traits noted above by talking to the person’s references. It is reasonable to check both employment and personal references. Regardless of whether you hire a caregiver through an agency or on your own, the process of finding the right person will involve your impressions and best evaluation of a few key traits: Qualifications Can the person perform the tasks that are needed? Does previous experience resemble duties they will need to perform? Reliability Will this person show up as expected and follow through with job duties? Compatibility Do you, the person needing care, and the new caregiver seem compatible? Will this person be genuinely concerned about the well being of someone in their care? Is the person open to working with you and ensuring that needs are met? Take your time in making a decision. Try to interview at least three people before making a final decision. Do not be afraid to follow your instincts. Warmth, compassion and respect are crucial for a long lasting working relationship. Remember that you need to oversee the care that is being provided. Check in with the caregiver and your loved one on a routine and unexpected basis to ensure that everything is going well. Setting up the Terms of Employment Before beginning to interview, decide the following: Wages you expect to pay When/how often payments are made Work hours Time off schedule

Job description - write out tasks and be as specific as possible When thinking about wages, consider that this is not the place to cut corners. The pay you offer shows caregivers how much their time and talents are valued. To determine a fair wage in any area, call local agencies or senior service organizations. Ask about the “going rate” for similar services. Always pay caregivers on schedule and for the full amount according to time worked. This includes time spent waiting if someone else is late to relieve them. If financial resources are limited, some caregiver assistance from the Department of Rehabilitation Services or the Department on Aging may be available. A social worker or care manager can help with this. Even when feeling overwhelmed, it is important to remember that there are options and you will find someone who is right for you. The guidelines above are designed to help lessen your feeling of being overwhelmed with the task of finding a trustworthy and caring person for help at home. Finding the right caregiver may take time and you may have to repeat the process if the person first selected does not meet expectations. You have the knowledge and resources to make a sound decision.

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Caregiving and Private Duty Agencies - Nationwide National Private Duty Association (Online list of home care agencies) To locate caregiver or private duty home care agencies across the United States, explore this online listing provided through the Home Care Association of America.

The online resource can be searched by city, state or zip code. Home Care Association of America 202-480-2972 http://www.hcaoa.org Return to Top

National Caregiver Organizations A caregiver can be a family member, partner, friend, or paid home health care worker who provides daily care so that a person with a disability can continue to live at home. Caregiving has many shapes and forms, as do persons who provide caregiving and persons who require caregiving. Whether you are a person receiving care or a person providing care, it is important to: This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

* Be informed – listen to each other and share information. * Get connected – develop support systems that expand beyond caregiving and care receiving relationship. * Be inspired – embrace the world around you and your contribution to it.

A number of national, regional, and local organizations address the needs of caregivers. Each of these provides a source of support in daily activities.

This list is not an indication of an organization's quality and it does not imply an endorsement from the Shirley Ryan AbilityLab Contact Information Caregiver Action Network 800.896.3650 202-454.3970 http://caregiveraction.org Empowering family caregivers and working to remove barriers to health and well being.

Family Caregiver Alliance 800.445.8106 https://www.caregiver.org/ Information on caregiver assistance and long–term care public policy.

Family Voices 800.445.8106 888.835.5669 888.950.8683 Illinois http://www.familyvoices.org Information on family–centered health care for children with disabilities and chronic conditions.

National Caregivers Library

804.327.1111 http://www.caregiverslibrary.org/home.aspx Online library on all aspects of caregiving: forms, checklists and links to other resources

Well Spouse Association 800.838.0879 http://www.wellspouse.org/ Support for partners of the chronically ill or disabled; offers support groups for members to share thoughts and feelings openly. Return to Top

Networking Sites for Patients and Caregivers Shirley Ryan AbilityLab – Henry B. Betts LIFE Center The following Internet sites provide ways for patients to connect with family members and friends via personalized, free, and secure websites; interactive calendar systems; or individual peer mentoring:

This list is not all-inclusive. CarePages.com: https://www.carepages.com/ A free private website allows patients to communicate with family and friends, share photos and health updates, receive messages and connect to others who have similar issues. En espanol tambien. CaringBridge: https://www.caringbridge.org/ Free, personal and private websites that connect people experiencing a significant health challenge to family and friends. Imerman Angels: http://imermanangels.org/ Imerman Angels matches a person with cancer or a cancer survivor with a person who has had the same kind of cancer (a Mentor Angel). Cancer caregivers (spouses, parents, children and others connected to a cancer patient) may request an individual connection for support. The relationships inspire hope and enable the new cancer patient to ask questions and receive support from someone who has been there. Lotsa Helping Hands: http://lotsahelpinghands.com/ A web–based schedule and caregiving coordination service to help families create a temporary community to organize meals, visits, outings and doctors’ appointments. There also is platform where This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

22 appropriate medical, financial, and legal information can be shared and where friends and families can post photos, blogs, and messages. MyLifeline.org: https://www.mylifeline.org/ Free, personal websites to support cancer patients, survivors, and their caregivers. Patients can post medical updates, receive messages from friends and family, post requests for a meal, ride, or baby sitting in the Helping Calendar, and set up a photo gallery. Return to Top

CONDITION INFORMATION Complications: Deep Vein Thrombosis (DVT) Author: Shirley Ryan AbilityLab - Spinal Cord Injury Team

Deep vein thrombosis (DVT) is commonly known as a blood clot. Blood clots may occur in someone who has had an injury or illness, is unable to move around as before, and does not have the use of muscles in the legs. Sometimes this occurs because the blood travels more slowly after injury or illness, and then a clot can develop. This is most likely to occur soon after an injury. Sometimes, other illnesses and prolonged bedrest give rise to blood clots. The risk becomes less when activity level increases. However, it is important to be aware of the potential problem. If treated, blood clots are not dangerous; but if untreated, they might break free, travel to the lungs or heart, and cause additional illness or even death.

Prevention

For the first two to three months following injury most people get medicine that thins the blood. This greatly reduces the chances for developing a blood clot. Sometimes the medication is given by mouth and sometimes by injection (shots). Occasionally, the medication itself has risks. inning the blood can result in extra bleeding from a cut or small injury. For this reason, the medicine is usually stopped after the time of greatest risk is past.

Staying active, doing exercise, and performing range of motion exercises, improve circulation and helps prevent blood clots.

While in the hospital, patients may be given sleeves to wrap around the legs that inflate and deflate with air in order to maintain circulation when in bed. They are often given in cases where blood thinning medication is not recommended. It is important to wear the sleeves whenever in bed to prevent blood clots.

Elastic stockings are frequently worn to help improve circulation. They also help decrease swelling in This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

23 the legs.

Signs and Symptoms

The most common sign of a blood clot is swelling of the leg. However, many people have swelling in their legs after they have been up all day, even without a blood clot being present. This swelling is usually present in both legs. Swelling from a blood clot will most commonly happen in the leg with the clot. It is important to get in the habit of checking legs each morning before getting dressed. If one leg looks larger than the other this may indicate a blood clot.

Other signs might include fever that does not go away with no other obvious signs of an infection; warmth, swelling, or pain in the leg.

Often a simple ultrasound test of the legs can show a blood clot. Contact your doctor if you would like more information on this.

Treatment Contact your primary care physician or go to the emergency room to be evaluated and treated, if necessary. Return to Top

Complications: Swelling or Edema and Contractures

Author: Shirley Ryan AbilityLab - Spinal Cord Injury Team

Swelling (edema) in the limbs is very common after a period of decreased activity. The swelling is fluid accumulating due to slowed circulation. Fluid builds up when legs hang down in a sitting position.

To prevent or manage swelling:

•Wear elastic stockings fit to legs or arms. These should be put on before getting up and before any swelling is present.

Raise legs for periods of time during the day either by propping them up on a chair or using elevated foot rests on the wheelchair. •Elevate arms both while in bed and out. •Swelling can make shoes too tight and can cause a pressure sore. Wear shoes that are a half or full size larger than normal.

Contractures happen in elbow, shoulder, knee and hip joints. When limbs are not moved, the muscles and tendons can shorten, making the joint stiff. Contractures can be painful, limit the ability to accomplish daily activities and make being in bed uncomfortable. Contractures are easier to prevent than This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

24 to treat once they occur.

Signs of contractures:

•Difficulty straightening or bending limbs all the way. •Severe contractures will make it impossible to move the joints in the arm or leg.

Preventing contractures:

•Stretch joints at least once a day. Use range of motion exercises to make sure that all the muscles and tendons are stretched completely. Some people, especially those with spasms, need to exercise more often. •Lying on the stomach (prone) helps. This stretches the knees and hips. In all other positions except standing, the knees and hips are bent or flexed. •To best prevent and manage contractures, follow instructions from your doctor and/or therapist. Medicines, exercises, splinting and casting may all be helpful. Return to Top

Pain: Medications for Pain Relief Author: Shirley Ryan AbilityLab – Day Rehabilitation Pain Committee Different medications fight pain in different areas of the pain pathway. Some fight the pain in the periphery (outside the brain or spinal cord); others act at the spinal cord level and others in the brain itself. They all have benefits and side effects and are often used in combination to address pain at a number of different levels. Medications should always be used along with non–drug pain management techniques to prevent and treat pain.

Non–narcotic Analgesics Non–narcotic analgesics include medications like non–steroidal anti–inflammatory medications. They act on pain in the periphery, by reducing inflammation and/or the body's chemicals that cause pain. They can be taken every day if your doctor says it is okay, and are not addictive. Some types of these drugs can cause stomach problems if not taken according to the instructions.

Antidepressant Medications Although these drugs were originally only used to treat depression, now they are also used to for other medical problems including pain and sleep problems. They act on pain at the spinal cord level and help with sleep problems at the brain level. They are not addictive and can be taken every day if your doctor says it is okay.

Narcotic Analgesics Narcotic analgesics act on pain at the brain level. They depress the nervous system and the emotions; decrease the ability to think; and slow breathing and heart rate. All narcotics are potentially addictive. This means that people who use them can develop a tolerance to the drugs which then become less helpful over time. Narcotics are effective painkillers immediately after an injury or surgery, or at the end of life, but they are not good medications to take for chronic pain. People with a history of alcoholism or other substance abuse should be very careful taking these medications.

Anticonvulsants Drugs prescribed for controlling seizures are often now used to treat nerve related pain. It is not known exactly how these drugs work to reduce pain, but because these drugs control and reduce activity of the nerves, it is thought that they can be used to reduce the activity of nerves

Note: Please consult your medical team for any questions about medications. Return to Top

Pain: Peripheral Neurogenic Pain (Nerve Pain) Author: Shirley Ryan AbilityLab – Day Rehabilitation Pain Committee

What is the peripheral nerve? Peripheral nerves connect your brain and spinal cord to other parts of your body and its tissues (bone, cartilage, muscle, tendon, skin, etc.). Peripheral nerves typically follow a pattern down the arm or leg that is easily noticeable and crosses many joints.

Important features about the peripheral nerve

1.Longest Tissue: The peripheral nerve is an extension of the brain and spinal cord. It is considered the longest tissue in our body. This tissue cannot be immobilized and thereby can be accessed for movement anywhere in the body. It is impossible to restrict overall movement of the nerve, even if local areas are stopped. This is a great feature of nerve tissue as nerves want to move!

2. Strongest Tissue: The peripheral nerve is the strongest tissue. Our bodies live in gravity dependent environment that can resist 6 times our body weight. For example, walking requires your nerves to resist 1.5 times your body weight for each step and running up to 3-6 times. Our nerves need this amount of flexibility to be healthy and live in these environments.

3. Dynamic Tissue: The peripheral nerve is the most dynamic connective tissue in the body, meaning it needs blood and oxygen. It weighs only 3% of your body weight, but uses 26% of your blood volume. Cardiovascular exercises are needed to restore healthy nerve dynamics.

4. Sensitive Tissue: The nerve is the most sensitive tissue in the body because it connects directly to the brain. The chances for sensitivity occurs with any negative word, thought, concern, worry, or misunderstood diagnosis. Negative thoughts or words could increase and spread your nerve pain similar to putting gas on the fire. Therefore, it is very important to catch and correct “stinkin thinkin” about your nerve(s), or any life pressures, concerns and life changes. Catch all negative thoughts and correct to positive ones, or in other words put water on the fire!

What is nerve pain? There are two causes of nerve pain. Your nerve can either be trapped or tight. A trapped nerve may behave similar to a mechanical inflammation pain mechanism, meaning the more you move it in certain directions, the more irritable it becomes. A tight nerve can act more like an ischemic (not enough blood flow) pain mechanism and can become underused with lack of activity, and therefore will need to restore normal movement and health. There may be days when nerve pain has no physical cause. The nerve pain can increase with stress, life pressure, lack of blood flow to the nerve and many other emotional and social factors.

How does a nerve heal? A nerve heals just like any other tissue. Sometimes a nerve is injured and the problem may not show up for days, weeks or months after. The nerve injury can occur in two ways. One way is the nerve suffers a direct injury and goes through the stages of healing similar to other tissues in our bodies and can become tight. The second way is more indirect in that a tissue the nerve passes through suffers an injury and affects the nerve eventually trapping it and causing symptoms. For example, if the tissue that the nerve passes through is unhealthy, it may trap it and affect the nerve’s blood supply causing irritation. Nerve symptoms may require working directly on the unhealthy injured tissue trapping the nerve before treating the nerve itself.

What does nerve pain feel like? · Sensations such as ‘shooting’, ‘burning’, ‘shocking’, ‘stinging’ or spasticity. · Numbness, weakness, deep ache or cramping. · Feelings of warmth and/or cold. ·Descriptions of pain are often unique to each person. You may prefer to use other words to describe your pain. · With time and treatment, your symptoms may change; this indicates that your nerve is healing. A common example is how you may experience weakness, then numbness, then tingling, and then burning pain. This shows the nerve is healing and returning normal sensations.

What are the common treatments for nerve pain? · Prior to developing a treatment plan, it is important to understand when the nerve is the tight or trapped. When a nerve is trapped the treatment is geared towards the tissue that is trapping the nerve. For example, a nerve pain going down the arm or leg can be cause from a trapped area in the spine, needing a specific direction to relieve its entrapment. When a nerve is tight the treatment is geared towards the nerve itself. Treatment of the tight nerve should focus on an exercise program to restore dynamic flexibility to the This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

27 nerve itself decreasing the sensitivity to the nerve as the mobility is restored.

· Movement is crucial for nerve pain. It is important to identify movements that cause your pain. You may need to glide the nerve first to get it to move comfortably before you stretch the nerve and put tension on it. Increasing your symptoms and overall feeling no worse after the movement is a safe situation and is more good pain than bad pain. “No worse” can be defined as an increase in symptoms when performing the specific movement or exercise, but returning to baseline within two hours.

Negative emotions and social situations can also play a role. It is essential to keep your mindset positive as you work through the treatment of your nerve pain. Relaxation, visualization and changing the emotional and social context of the pain can help create a calm, peaceful state in the brain and therefore body. When dealing with emotional and social triggers to your pain, try to practice deep breathing and positive thinking.

· Your nerves are temperature sensitive. Just as the body reacts to changes in temperature, so can your nerves. Be aware of your ability to tolerate cold and warm temperatures, as this may also be a factor in your nerve pain. For example, if you are sitting under the cold air vent at work and your neck or shoulder pain worsens, see if you can change your position, or remember to bring a warm sweater to wear. Simple changes like this can help you better manage your nerve pain.

· Nerves love blood and oxygen. Cardiovascular exercise is the best way to promote blood flow and oxygen to your nervous system. A brisk ten-minute walk can improve blood flow throughout your body and help decrease nerve pain especially as the day progresses.

What else can help? In addition to the above, non-drug treatment strategies, medications may help you to tolerate your nerve pain. Consult with your doctor to learn what type of medication can work best.

References: Kolski, M.C. & O’Connor, A. World of Hurt: A Guide to Classifying Pain. (2015). Thomas Land Publishers, Inc. www.musculoskeletal-pain.com

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Pain: Non–Drug Pain Management Techniques Author: Shirley Ryan AbilityLab – Day Rehabilitation Pain Committee Pain following an injury is common and can affect life in a number of ways. This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

• Pain can interfere with sleep and cause fatigue. • Pain can make you feel less patient and more irritable. • Small stressors and hassles you usually handle can become more difficult. • You may be afraid of the pain and worried that it means something is seriously wrong. Pain may interfere with the things you want and need to do. You may do less and less because you are hurting, tired and cranky. This inactivity can have serious consequences. Pain can cause problems with family, friends and co–workers. • The effects of pain can lead to other physical problems and emotional problems, including depression. Certain types of injuries sometimes cause predictable pain problems. For example, people with mild brain injuries often have more severe pain, especially headaches, than those with severe brain injuries. Others may have more pain in the neck and shoulders. Pain should be treated, not ignored. The medical team can help with prescribing medications and suggestions for pain management techniques. A combination of strategies is usually best and can be individualized for each person. Talk with your doctor and health care team to determine the best treatment for you. Pain Management Techniques Relaxation Relaxation is a state of physical and emotional calmness. The muscles of the forehead, jaw, neck and shoulders are often very tense during headaches and other pain episodes. This tension makes the pain worse. Relaxing the muscles is a way to break this cycle and thus reduce the pain or at least make it easier to manage. During relaxation, muscles are free of tension, reducing anxiety and irritability. For most people, relaxation must be learned. It is not just resting or watching TV; it is a deliberate reduction in mental and physical activity. There are many ways to learn relaxation, including breathing techniques, biofeedback, progressive muscle relaxation (PMR), imagery and meditation. Your psychologist or nurse can help you learn relaxation.

The more you practice and use relaxation, the better it will work to help manage pain. Relaxation should be practiced both when in pain AND when not in pain; don't wait to practice until the pain strikes. With regular practice, a relaxed state will be quicker and easier to achieve. Distraction Distraction is focusing the attention on something other than the pain sensation. It starts with concentrating on something external, like music, or something internal, like an image. Distraction can be used in two ways: to handle flare–ups of pain and to provide interesting things to do and think about each day.

Exercise Prolonged inactivity causes muscles to tighten up and become weaker, both of which cause pain. Appropriate physical activity can help many people manage pain. Always follow your therapists' and doctors' suggestions. Do your daily exercises and stay as active as possible. Posture Poor posture puts a strain on muscles and causes pain. Your occupational or physical therapist will show you how to sit, stand, and move. Nutrition Most people feel better eating a healthy diet. If you need help learning how to eat healthfully, consult with a nutrition professional. Caffeine and/or nicotine may increase muscle tension. They can also cause withdrawal pain which occurs when you do not get your usual amount of coffee, soda or cigarettes. Alcohol can increase feeling of depression and make it harder to function. Also some medications are affected by alcohol. Make sure to talk to your doctor about the effects of alcohol on medicine. If you or your family feels that alcohol is a problem or if you would like to cut down on caffeine, nicotine or other stimulants, talk to your doctor or psychologist. They can help. Maintaining Activities With chronic pain, you may not be doing activities that you used to enjoy, because of the pain or because of being too tired or depressed to want to do anything. If the pain has gone on for a long time, you may have little or nothing to do or think about except the pain. Try the following: • Think about all the things you used to do each day and decide which were most enjoyable. • Continue to do the enjoyable things that you can still do or try to modify the ones you cannot do. • Vary your activities and try to find new activities to enjoy that are within your physical limits.

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Personal Health Record - Create Your Own Author: Shirley Ryan AbilityLab – Henry B. Betts LIFE Center Creating a plan for successful caregiving includes organizing information to support daily care.

A personal health record is a tool that enables consumers to manage health information so they can communicate more effectively and easily with health care providers. Ideally, the PHR would include an up-to-date summary of doctor and hospital visits, medications, over-the-counter products, allergies, test results, and chronic diseases and conditions in one convenient and confidential location. This will save time and minimize stress, especially in emergency situations. Personal health records detail information in a variety of areas: Emergency contacts Personal information Insurance List of doctors and other healthcare providers Allergies, medications, immunizations, general health information Preferred hospital Advance directives and/or health care power of attorney forms Personal health records can be maintained using electronic or paper format: Index cards Notebook or folder Computer software Flash drive or CD A number of free and commercially available products are available for consumers to keep track of information. https://familyhistory.hhs.gov/FHH/html/index.html http://www.myphr.com The following example of a basic personal health record can be used to begin gathering information. Once the information is recorded, keep in mind that the effectiveness of the profile depends upon its being kept current. Update your profile each time a change occurs. Reference: http://www.nlm.nih.gov/medlineplus/personalmedicalrecords.html

PERSONAL HEALTH RECORD

Name:______DATE REVISED:______Birthdate:______Height ______Weight:______Vision: glasses contacts low vision other______Hearing Loss: hearing aids reads lips reads sign language Swallowing difficulties: ______Allergies:______Advance Directives - copy located/attached: ______Health Care Power of Attorney- copy located/attached:______Immunization Record – copy located/attached: ______

Lifestyle Risk Factors:

Alcohol Drink(s) Per Week: Number of Years:

Smoking Pack(s) Per Day: Number of Years:

Drug Use Frequency/Type: Number of Years:

Weight Body Mass Index: Normal Overweight Obese

Exercise Type(s) of Exercise: Days Per Week:

Emergency Contacts

Name

Relation

Street Address

City, State, Zip

Home or Work Phone

Cell Phone

E-mail

Name

Relation

Street Address

City, State, Zip

Home or Work Phone

Cell Phone

E-mail

Medical Emergency Contact Information

Hospital Preference

Primary Insurance

Secondary Insurance

Primary Doctor/ Phone

Other Healthcare Providers

Name/Specialty

Phone

Name/Specialty

Phone

Name/Specialty

Phone

Name/Specialty

Phone

Name/Specialty

Phone

Other Key Contacts – Family / Friends

Name

Relation

Street Address

City, State, Zip

Home or Work Phone

Cell Phone

E-mail

Name

Relation

Street Address

City, State, Zip

Home or Work Phone

Cell Phone

E-mail

Name

Relation

Street Address

City, State, Zip

Home or Work Phone

Cell Phone

E-mail

Functional Information Medical Diagnoses/conditions/surgeries (include dates): ______Equipment and devices used: ______

Prosthetic / Orthotics Information

Device used

Pros/Orthotist Name

Street Address

City, State, Zip

Home or Work Phone

Cell Phone

E-mail

Functional Status

Activity Can Do This Alone Need Someone to Stand By Needs Hands-on Help

In/out of Bed

In/out of Chair

Walking

Stairs

Bathing

Dressing

Using the Toilet

Eating and Swallowing

Housework

Communication

Safet

Medication Information

Pharmacy Name

Street Address

City, State, Zip

Phone / FAX

E-mail

Medication Dose / Frequency Reason for Taking

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Physical Deconditioning Author: Elizabeth Wojciechowski, PhD, RN; Jana Ellison, MS, OTR/L After experiencing an injury or with any chronic disease, it is common to experience deconditioning, a physical and/or psychological decline in function. Prolonged bed rest and inactivity can affect nearly all systems of the body. Some of these effects include:

–Cardiovascular (heart): decrease in cardiac output, faster heart rates at rest and with activity, decreased blood pressure in upright positions (orthostatic hypotension), decreased ability to exercise.

–Pulmonary (lungs): mild lung collapse, pneumonia, decreased oxygen to the organs (hypoxemia), increased difficulty breathing with activity and at rest.

–Muscles and bones: decreased muscle size, increased weakness (atrophy), osteoporosis, contractures, osteoarthritis, loss of flexibility.

–Digestive (gastrointestinal and bowel): loss of appetite, constipation.

–Urinary: loss of bladder control (incontinence), bladder infection, electrolyte imbalance.

–Blood: tendency to develop blood clots (thromboembolism), blood thickening (increased blood viscosity).

–Endocrine: impaired response to insulin, high blood sugar (hyperglycemia), nausea.

–Skin: pressure ulcers or wounds.

–Functional: decrease performance in Activities of Daily Living (ADL) and activity endurance, impaired balance and coordination.

–Psychological: confusion, disorientation, anxiety, depression.

These changes can affect the ability to do self care, to walk, to engage in leisure activities and to work. Rehabilitation is the process that provides relief from the effects of deconditioning. Goals of rehabilitation include reconditioning and improving physical and psycho–social functions.

Patients and the rehabilitation team develop an individualized exercise program. This program is designed to: – improve joint flexibility – build muscle and muscle tone – improve heart and lung function – increase general endurance – improve mood – build strength and muscle.

The doctor and rehabilitation team may also review energy conservation and work simplification techniques to assist patients with enjoying life and meaningful activities. Through participation in an individualized rehabilitation program that addresses the whole person and his or her individual needs, patients may hope to achieve improved quality of life. Prior to participating in any exercise program, check with your healthcare provider.

References : Casaburi, R. Impacting patient–centered outcomes in COPD: Deconditioning. European Respiratory Review 2006; 99: 42–46. DOI: 10.1183/09059180.

LeMone, P., Burke, K. & Bauldoff, G. (2011). Medical Surgical Nursing: Critical Thinking in Patient Care. 5th ed. Boston, MA: Pearson.

Rimmer, J.H., Schiller, W., & Chen, M.D. Effects of disability–associated low energy expenditure deconditioning syndrome. American College of Sports Medicine. 2012; 40(1) 22–29.

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EDUCATION AND EMPLOYMENT Shirley Ryan AbilityLab Vocational Rehabilitation Services

Vocational Rehabilitation at the Rehabilitation Institute of Chicago (RIC) assists people with disabilities in returning to work. A wide range of services can help both employers and individuals. A doctor's referral is required to begin the process. Services include:

Comprehensive Vocational Evaluation

Work Trial Assessment

Return-to-Work Evaluations

Job Placement

Job Retention

Contact Information: https://www.sralab.org/services/vocational-rehabilitation 312-238-6800 Return to Top

EQUIPMENT Emergency Call Systems Shirley Ryan AbilityLab – Henry B. Betts LIFE Center Being elderly or having a disability can put a person at risk in an emergency, especially in the case of someone who has difficulty physically reaching or using a telephone. Emergency call systems can be very helpful, allowing a person at home to summon caregiver assistance inside the home or to call outside the

40 home to a neighbor or 911.

Of course, a traditional phone or cell phone can be used in an emergency, but if a person has difficulty manipulating a phone when conditions are normal, doing so during an emergency may be impossible. Call systems are typically easier to access because they are activated by a switch or button that is always with the person. A phone may be out of reach, but an emergency call system can be activated from any location.

Many options, including alternatives to the costly hospital-based call systems, are available. The Shirley Ryan AbilityLab does not endorse any one system; we encourage patients and their families to investigate the system that best meets individual needs.

Inside the home options In-home systems are used to reach someone who is in another part of the house. An individual may have a caregiver 24/7, but at some point the caregiver will be in the laundry room, another bedroom or otherwise occupied. These methods can be used for calling attention to a medical problem or just summoning assistance.

Resources for Home Systems: - Adaptivation - Learning, Sight, & Sound (L,S & S) - Smart Home

• Baby monitor - low cost way to summon assistance. Sources: drug or discount stores • Intercom - one or two way voice communication system with hands-free or pushbutton activation. When it is in hands-free mode, it acts like a baby monitor. Source: various, including Radio Shack • Chime alarm - Powered buzzer that can be plugged into any room and operated remotely via an X10 handheld transmitter. Sources: Radio Shack (special order), SmartHome • Personal pager - Help is summoned by pushing transmitter button; receiver unit beeps or vibrates to notify others that help is needed. The unit from Adaptivation is modified to accept an alternative switch if the standard button cannot be pressed. Some versions also flash a light, if needed. Sources: LS & S, Radio Shack, Adaptivation. • Wireless doorbell - inexpensive way to call for assistance. A transmitter button is pressed and the receiver rings. The receiver can be carried in a pocket or placed in a central location. Sources: home repair stores or online.

External call systems External call systems are used when there is no other person in the house. These systems, either monitored or non-monitored, alert someone outside the house in case of an emergency. Typically this person is a family member or neighbor who can easily respond.

Non-monitored emergency call systems These are stand-alone systems that are available for purchase. Pressing the button on a pendant initiates This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

41 the unit to dial pre-stored telephone numbers of a neighbor or relative. When the call is answered, a pre- recorded message provides information about the caller. (For example "This is Joe Smith. I live at 123 Main St. I have a heart condition. Please send assistance.") Some units allow a person receiving the call to communicate with the caller. Other systems just send the alert. These systems cost about $90-$150 to purchase. There are no additional monthly fees. See below for resources.

Monitored emergency call systems These systems are designed for people who are home alone. In the event of an emergency, the user activates a speaker phone which automatically dials a 24 hour answering service. The phone call is initiated by pushing a button on a pendant that is worn on a wrist or a necklace. Adaptive switches are available for people with limited hand function. The answering service has information on the caller’s medical conditions, medications and emergency contacts. The service calls 911, a neighbor, or takes other actions while staying on the line. In the event that the caller cannot speak, there is a pre-arranged plan to have someone physically check in at the caller’s home. Monitored call systems charge a monthly fee, typically between $40-$70/month. See below for resources.

Resources for non – monitored systems • Home Technology Systems MainStreet messenger • Life Alert Cellular 911- only dials 911 services • Skylink AD-105 Dial-Alert Emergency

Resources for monitored systems • ADT Medical Alert System • American Medical Alarms • Lifeline • Life Guardian • Life Medical Alert • Life Station • GE Healthcare (QuietCare) Adaptivation http://www.adaptivation.com/ ADT Medical Alert Systems https://www.adt.com/medical-alert American Medical Alarms, Inc. http://www.americanmedicalalarms.com/ Home Technology Systems, Inc. http://www.hometechsystems.com/seniorliving_mainstreet.cfm

Life Alert https://www.lifealert.com/ LifeGuardian https://safeguardian.com/ Lifeline Medical Alert Systems https://www.lifeline.philips.com/ LifeStation, Inc. https://www1.lifestation.com/ Skylink http://skylinkhome.com/ Smarthome http://www.smarthome.com/skylink-ad-105-dial-alert-emergency-dialer.html

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Shirley Ryan AbilityLab Assistive Technology Center

Shirley Ryan AbilityLab’s Assistive Technology Program offers a variety of services to enhance your independence, comfort and quality of life. At AbilityLab, you have access to experts who can assist you with state-of-the-art devices, technology (software and hardware), assistive robots and other adaptive technology and equipment.

In addition to the wide range of assistive devices we can offer, the Center’s occupational therapists (OTs) and speech-language pathologists (SLPs) specialize in use of and training with these devices as part of your rehabilitation plan.

Plus, AbilityLab is one of few hospitals in the nation that is able to customize your device right in our lab — avoiding the hassle of having to make multiple appointments and get to multiple locations.

There are a variety of assistive technology options to help meet the daily needs of patients, for example: • Communicating wants and ideas using speech; • Accessing a telephone quickly in cases of emergencies; • Controlling telephone, lights, TV, electronic equipment or hospital bed; • Accessing a computer for school, work or personal use.

Contact: https://www.sralab.org/services/assistive-technology 312.238.2998

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EXERCISE AND MOBILITY Home Exercise Program Master List – Physical and Occupational Therapy

This is the master list for home exercise programs. If you are viewing online, click on the title below to access to be directed to the specific exercise. If offline, copy the title into the search box at https://www.sralab.org/lifecenter

Dowel Rod Exercise Program

Elbow (Half Arm) Air Splint Home Exercise Program

Exercise Guidelines Across the Female Lifespan

General Posture Exercise Program

Lower Body: General Lower Extremity Exercises

Lower Body: Passive Range of Motion Exercises

Lower Body: Range of Motion Exercises for the Legs

Lower Body: Range of Motion Exercises Self Directed for the Legs

Lower Extremity Exercises - Knee

Mirror Therapy

Pain: Progressive Muscle Relaxation Exercises (PMR)

Parkinson Disease: Exercise Fact Sheet

Pelvic Floor: Female Anatomy

Pelvic Floor: Muscle Exercises - Inner Strength for Women of All Ages

Pelvic Floor: Muscle Exercises - Urge Suppression Technique

Pregnancy: Basic Mobility Techniques

Pregnancy: Exercise following a Cesarean Birth

Pregnancy: Exercise Guidelines

Pregnancy: Posture and Body Mechanics

Pregnancy: Preventing Back Pain

Proper Body Mechanics

Shoulder Surgery- Tips for Recovery

Spinal Cord Injury and Gait Training

Upper Body: Arm Strengthening Exercises with Tabletop Support

Upper Body: Exercise Program - Forearm and Wrist

Upper Body: Exercise Program - Grasp

Upper Body: Fine Motor Exercise Program - Finger Exercises and Activities

Upper Body: Functional Tasks for Weaker Arm Use

Upper Body: Prone Scapular Exercises

Upper Body: Range of Motion Exercises - Self-Directed for the Neck and Arms

Upper Body: Range of Motion Exercises for the Arms - Passive

Upper Body: Thera Band Exercise Program - Basic

Upper Body: Thera Band Exercise Program - Advanced

Upper Body: Upper Extremity Exercise Program

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Proper Body Mechanics Author: Terra Grywalski, OT This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

Body mechanics is the way one's body is held and moves during daily activities. One of the most important components of body mechanics is posture, which refers to the position of the spine, arms, and legs.

Improving body mechanics through proper posture, positioning, and exercise can help to prevent back pain, neck pain, headaches, pressure sores and further injury or deformity to the spine. Applying proper body mechanics during everyday activities promotes a more “neutral” alignment of the spine and helps reduce the risk of injury.

Please consult with a physician and/or therapist for specific and individual recommendations on body mechanics.

Sitting Position • Always sit with shoulders and hips facing in the same direction. • Rest back against the back of the chair and DO NOT SLOUCH. Slouching places extra stress on the lower back that can cause muscle fatigue, weakness, discomfort and unnecessary pressure to a sensitive area of the spine. • Place both feet flat on the floor (or foot rests if you are in a wheelchair) approximately shoulder width apart. • If desired, place a small pillow or rolled towel in the low back area (lumbar region) to promote natural curve of the spine. • Choose an office chair with a high supportive back, armrests and no wheels. • If using a wheelchair, consult a professional for guidelines on appropriate back support, arm and foot rest height and seat cushion. This creates the best position for activities and to prevent pressure areas. • If sitting on a couch, use pillows to provide more support and stability. Wheelchair users can place wheelchair cushion on the couch for comfort, pressure relief and positioning.

Sitting Exercises To Do Daily • Pull chin down and back like a turtle pulling his neck into his shell. Repeat ten times. • Squeeze shoulder blades together and hold for five seconds. Repeat ten times.

Standing Position • Wear comfortable rubber soled shoes to support arches. • Avoid wearing high heeled or platform shoes for long periods of time. • Do not lock knees. • Stand with feet shoulder width apart, shoulders relaxed and rolled back • Align head with spine, not tilted forward. • If balance is good, while doing standing activities, relieve pressure on the lower back by placing one foot on a low step stool. Alternate feet often. • Try to work at the appropriate table height to prevent slouching over work space.

Sitting Exercise Tuck buttocks in, tighten stomach, and use both arms to pretend rowing a boat. Reach both arms straight This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

47 out in front then pull back toward body with elbows out to the side. Squeeze shoulder blades together.

Sleep Position • Use a firm mattress. • Use a pillow that allows head to rest evenly with the rest of body to promote straight spinal alignment. • Do not sleep on stomach; it can over–extend the lower spine. • To relieve low back pressure, place a pillow under the knees (not recommended after a total knee replacement) while lying on back. • While lying on side, place a pillow between the knees to promote a neutral alignment of the spine. Neutral spine can be demonstrated by your therapist. • To prevent twisting during sleep, place a body pillow down the backside. • Protect small joints too – try to keep wrists and fingers straight to prevent stiffness (especially with arthritis).

Lying Down Exercise Inhale while inflating the stomach. Exhale and attempt to tighten and pull navel toward the spine.

Lifting • Keep in mind any medical precautions from physician before lifting anything. • Assess the weight of the load before lifting anything. If too heavy, ask for help! • Position feet shoulder width apart to ensure a broad, comfortable base of support. • Do not hold onto unsteady furniture for support. • Do not bend from the waist. Squat while bending the knees and keeping back straight. • If turning while lifting, turn with feet. DO NOT TWIST. • Keep weight of the object as close to the body as possible. • Try to avoid lifting heavy objects higher than shoulder height. • Utilize long handled reachers, long handled shovels, mops and dust pans to protect back. • Consider pushing heavy items on wheeled carts instead of carrying. • When carrying groceries and laundry, make several trips of smaller loads.

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FINANCE Paying for Home Care This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

Author: Shirley Ryan AbilityLab – Henry B. Betts LIFE Center Private Insurance and Managed Care Organizations Most private insurance companies will pay for visits by registered nurses and skilled care therapists (occupational, physical, speech therapist) in the home if prescribed by a doctor. These services help with adjusting to being at home following discharge from the hospital. Typically insurance companies cover the costs for only a short time and do not cover routine, non–skilled physical care like wound care.

Medicare Medicare pays for short–term skilled care if prescribed by a doctor. This might include a short–term personal care aide two to three times a week for one to two hours each time. Check with a social worker or care manager for the latest information on Medicare coverage of home health care services.

State Agencies State agencies may pay for some home health care services. In Illinois, the Department of Human Services (DHS) pays for personal care attendants for people with physical and financial need and are under the age of 60.

Medicaid Waiver for Persons with a Brain Injury Program This program helps individuals with brain injuries who are at risk of going to a nursing home without the following services: personal assistance, homemaker services, home health and nursing, home–delivered meals. See link to the right for more information.

Department on Aging (DOA) While each state is different, many do pay for and provide personal care attendants for persons over age 60 who have physical and financial need.

University of Illinois at Chicago Division of Specialized Care for Children (DSCC) DSCC helps coordinate care for families and children with special health needs, including disabilities.

Workers Compensation and Long Term Care Policies Some persons who become disabled while working for a federal employer may be eligible for workers' compensation programs to cover in–home services. Federal employees can contact individual employers or the United States Department of Labor, Office of Workers' Compensation Programs, the Longshore and Harbor Workers' Compensation Program, and the Black Lung Benefits Program.

Some individuals also have private insurance coverage for long term care, which frequently covers in– home health services; both for skilled and unskilled care.

Centers for Independent Living Centers for Independent Living (CIL) are private, non–residential agencies that provide information to help maximize independent living conditions for persons with disabilities in their own communities

http://www.ilru.org/html/publications/directory/ Independent Living Research Utilization (713) 520-0232 (Voice/TTY) http://www.ilru.org/ Centers for Medicare and Medicaid Services (CMS) 800-633-4227 https://www.cms.gov/ Office of Workers’ Compensation Programs https://www.dol.gov/owcp/

ILLINOIS RESOURCES: Illinois Department of Human Services 100 S. Grand Avenue East Springfield, IL 62762 800-843-6154 800-324-5553 TTY/Nextalk or 711 Illinois Relay http://www.dhs.state.il.us/ Illinois Department on Aging 1 Natural Resources Way Suite 100 Springfield, IL 62702 800-677-1116 https://www.illinois.gov/aging

University of Illinois Division of Specialized Care for Children (DSCC) 800-322-3722 http://dscc.uic.edu/

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Social Security Disability Benefit Overview

Author: Paula L. Thomas, RN; Lynn Danford, MS, LD When people think of Social Security (SS), they usually think of retirement benefits which are collected at age 65 or 67. While this is true, social security benefits are also available to individuals who are under the age of 65 and have become disabled. The information below provides an overview of the Social Security Disability benefit (SSDI) program, including the application process and information on who is eligible to receive benefits.

Social Security Disability Benefits (SSDI) The SSDI benefit program is considered an Entitlement program. This means that if you qualify under the definition of “Disability” and have paid into the social security system through payroll deductions, you are entitled to receive these benefits. Most individuals who work do have social security contributions automatically deducted from each paycheck. There can be exceptions, and it is always wise to check pay stubs or speak with your employer to verify participation.

Eligibility Social Security pays benefits to people who cannot work because they have a medical condition that is expected to last at least one year. The SS Administration also requires that two different earnings tests be met: a “recent work test” based on age at the time of disability; and a “duration of work” test based on amount of time spent working under social security. You may request an estimate of your disability benefits (as well as Retirement/Survivor Benefits) by contacting your local SS office and requesting your SS statement. You may also access this information through the SS web site (address listed below). You may not qualify for benefits if you have not paid into the SS system or have had a limited work history during the last 10 years.

Certain members of your family may also qualify for benefits if you become disabled: • Spouse, if age 62 or older; • Spouse of any age if he/she is caring for your child who is under the age of 16 or disabled and also receiving SS benefits; • Unmarried child, including an adopted child, or in some cases a stepchild or grandchild, if under age 18 or under age of 19 if in school full time; • Unmarried child, age 18 or older, if he or she has a disability that started before age 22.

Application Process

You can apply for benefits online (see link below), by phone or by making an appointment at a local SS office.

The following information is needed to file an application: • Social security number; • Birth or baptismal certificate; • Names, addresses and phone numbers of doctors, caseworkers, and medical facilities and dates of visits; • Information on all medications; • Medical records; • Laboratory and test results; • Summary of work history; • Copy of most recent W–2 Form or, if self–employed, federal tax return for past year.

Medicare Benefits Medicare coverage is available automatically after receiving disability benefits for two years.

Appeal Process If an application for Disability Benefits is denied, you have the right to appeal the decision. The appeal request must be made in writing within 60 days from the date of receiving the letter from SS. Contact the local SS office for more information on filing an appeal.

SS Disability Benefits and Workers Compensation (WC) Benefits You may collect both SS Disability Benefits and Workers Compensation Benefits at the same time. There may, however, be an “offset” which could reduce the amount of SS. In some states, the “offset” works in the other direction where the WC benefits are reduced and the SS benefits remain the same. Check with your local SS office to determine how it would work in your particular situation.

Termination of Disability Benefits Many people worry that SS Disability Benefits could be terminated. This usually happens for two reasons. The first would be if an individual were able to return to work and had an income that is determined “substantial,” usually average earnings of $900 per month or more. The actual amount allowed may fluctuate based on work expenses or changes in the SS guidelines.

The other reason that benefits could be discontinued would be that the SS Administration determined that a person's medical condition has improved and he/she is no longer disabled. If your benefits are terminated and you feel that you are still disabled and should continue to receive Disability Benefits, you have the right to appeal this decision – see above for more information on the Appeal Process.

For more information, there are many different pamphlets. Spanish versions are also available. See link below. Social Security Administration 800.772.1213 This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

52 https://www.ssa.gov/

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HOUSING Adapting a Home for Wheelchair Accessibility Author: Kimberly Eberhardt Muir, MS, OTR/L There are several ways to create a more accessible space for a person in a wheelchair. Some options include: altering an existing floor plan, building an addition, converting existing rooms, or buying a new home. The following guidelines will be helpful to anyone planning for wheelchair accessible housing.

Always measure the width and length of your wheelchair since there are many different sizes. The dimensions listed below refer to standard wheelchairs. Owners of power and reclining models may need to modify the measurements based on the length and width of the chair. It is important to identify specific needs.

Entrance and Exit

Parking: If you use a garage, make sure the entrance is high enough for a raised roof van and wide enough to allow the use of a wheelchair lift or to make an easy wheelchair transfer. Approximately eight feet is needed for a wheelchair lift and five feet of space is needed for a transfer from the wheelchair.

Illustration of optimal parking space dimensions-cars/vans

Specifications for a ramp or pathway to entrance

• 36 to 48” wide pathways • 32 to 36” high hand rails that extend 1' beyond ramp • Slip resistant surface (non–slip strips, indoor/outdoor carpeting, sand paint) • Covering for inclement weather • Ramp materials: wood, concrete expanded aluminum • 12” of ramp for every 1” of vertical rise • Free swinging (no spring or hydraulic mechanism) • ½” or less threshold edge height • Option: electric entrance door opener • If a ramp is longer than 30 feet, it needs to change direction. With a change of direction, a level platform or landing should be used. The minimum landing size required is 5' x 5'. • If there is no room for a ramp and/or the ramp is too steep or unsafe, a vertical lift or elevator may be used. • Ask your occupational therapist for information on lifts, ramps and elevators.

Interior/General Living Space

Doorways 32” minimum distance between frames, although some chairs can negotiate a 28”doorway; it depends on the width of the chair.

Options to increase the width of doorways:

• Offset, Z–shaped door hinges • Remove the frame on the door • Remove the door itself • Reverse the swing of the door

Illustration of optimal doorway width

Door Handle

• 36” from floor • Levers preferred over knobs

Thresholds

• Eliminate if possible • Use threshold ramp, bevel, or recess

Hallways

• 36 to 48” wide • Consider using corner protectors/bumper guards

Floors

• Hardwood or tile preferred • No slip mats • If there is a carpet, choose low pile

Outlets/Switches

• 40” from floor is optimal • Levers or rocker switches (operate with closed fist)

Telephones

• Accessible in bedroom and bathroom • Use cordless or cell phone for increased portability

Furniture

• Maintain adequate wheelchair passageway • Table or work area should have at least 29” leg clearance underneath • Remove breakable objects on furniture

BathroomToilet

• 16” or less from floor if commode or shower chair is used over the toilet • 17 to 18” high if pivoting to transfer to toilet • 2 ½' to 3' transfer space on one side, depending on height

Sink

• 34” or less from floor • Open underneath with insulated pipes is optimal • Lever controls – single faucet preferred • Adjoining counter space • Lowered, tilted mirror

Bathtub

• 2½' of transfer space on side for transfer/bench • Reinforced walls for grab bars (able to withstand 300 pounds of pressure in any direction) • Hand held shower • Grab bars should be 2 to 2½' long and 32 to 36” high

Roll–in shower

• 5' x 5' optimal space • ½ ” or less threshold • Drain in far corner, 1” lower than bathroom floor • Grab bars on showerhead wall and adjacent wall 30 to 32” from the floor • Soap dish 30 to 36” from floor • Hand held shower adapter able to convert to standard showerhead with diverter button • Antiscald device so temperature does not exceed 120º; protects sensory impaired skin from burns

KitchenTurning Radius

• 5' x 5' optimal

Illustration of optimal turning radius

Countertops

• 30 to 33” from floor optimal height • 27 to 29” knee clearance optimal

Refrigerator

• Side by side model preferred

Sink

• 34” or less from floor • Insulated pipes beneath underside of sink • Thermostatic control on faucet sink hose

Storage

• Pull out shelves • Lazy Susan cupboard • Open shelving • Track shelving • Wall mounted peg board to hang pans

Stove

• Front controls preferred • Mirror over stove to see contents in deeper pots may help

Microwave

• Place on countertop in area which is easy to reach

Washer/Dryer

• Front loading models better

BedroomBed

• Firm mattress – 22” from floor optimal for transfer from wheel chair • 3' on either side of bed for wheel chair transfer • May need space for hospital bed

Closet

• Sliding doors • Rods 4' or less from floor

Dresser

• Pull handles or straps • 34” or less from floor

Set Priorities before Starting a Modification Project Most people work on the major architectural barriers first. Priority is usually: entrance, bathroom, bedroom, and then other rooms of the house. The permanence and quality of modifications depends on the needs of the person using the wheelchair and family, estimated time spent in the home, available finances, and whether the residence is being rented or owned. The following guidelines can help the modification process go more smoothly.

• To avoid over–designing, recognize your abilities and disabilities. • Ask other people with disabilities for advice. They can refer reputable contractors and give suggestions based on personal experience. • Know your individual needs. Analyze and operate all equipment before buying to make sure it works for you. • Use a specialty or standard contractor. • Try to solve problems with a minimal investment in time and money. • Always review plans.

References:

United States Access Board: https://www.access-board.gov/ Universal Design Principles: https://www.ncsu.edu/ncsu/design/cud/about_ud/udprinciples.htm Standards for Accessible Design: https://www.ada.gov/2010ADAstandards_index.htm

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Home Assessment - Short Form

Author: Holly Paczan, PT This form is designed to assist therapists in making recommendations for home modifications. The most important areas of modification are entrance/exits, door widths, and the layout of those bathrooms that have tub showers or stalls. When taking doorway measurements, consider that the door will take up space, therefore measure from the door frame to the door. Please contact your therapist if you have any questions regarding the information on this form. Patient Name: ______

Therapist's name/phone number: OT______PT______General Information Type of home: RANCH APARTMENT TWO STORY RAISED RANCH TOWNHOME SPLIT LEVEL (circle) Number of levels (including basement): ______Primary entrance to house: Is entrance able to be ramped? YES NO (circle) Number of steps into the home: ______Height of each step: ______(inches) Are rails present on right/left/on both sides (circle) when entering? Door entrance: Width of door at entrance to house: ______(inches) Bathroom Complete the information for the bathroom that has a tub or shower. If there is more than one bathroom, assess the most feasibly accessible bathroom with a tub or shower. Width of the door into bathroom: ______(inches) Opens: IN/OUT RIGHT/LEFT (circle) Is there a TUB/SHOWER STALL/BOTH in the same room (circle)?

For tub shower, complete the following: When facing the tub from the outside, which side is the faucet on? RIGHT/LEFT (circle) Height of tub ledge: ______(inches) Specify if nonstandard tub: ______CURTAIN/SLIDING DOORS (circle), if other specify: ______Is a hand held shower present? YES NO (circle)

For shower stall, complete the following: Width of the entrance to shower: ______(inches) CURTAIN/SLIDING DOORS (circle), if other specify: ______Hand held showerhead available? YES NO (circle) Height of threshold/lip into shower: ______(inches) Which direction do you approach the shower? RIGHT LEFT (circle) Toilet Height of toilet: ______(inches) Space available to right of toilet: YES NO (circle) Space available to left of toilet: YES NO (circle) Is there a counter/surface on R or L of toilet? YES/NO RIGHT/LEFT (circle) Is the wall adaptable for installation of grab bars? YES NO (circle) Is there space to position a wheelchair next to tub/shower? YES NO (circle) Is there space to position a wheelchair next to toilet? YES NO (circle)

Bedroom Door width leading into bedroom: ______(inches) Height of bed: ______(inches) Are there narrow hallways in the home? YES NO (circle) Are there tight turns in the home? YES NO (circle) Miscellaneous Info What kind of vehicle will patient be transported in? ______Is there any existing medical equipment in the home? Please check all that apply:

□ Rolling walker □ Transfer board □ Tub transfer bench □ Cane □ Shower chair □ Commode □ Axillary crutches □ Elevated toilet seat □ Grab bars □ Forearm crutches □ Hospital bed □ Large base quad cane □ Hemi walker □ Mechanical lift □ Orthotic/splint □ Standard walker □ Scooter □ Rollator (4 wheel walker) □ Manual wheelchair □ Small base quad cane □ Stander □ Power wheelchair

Other Information:

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Home Modifications and Funding Options

Author: Kimberly Eberhardt Muir, MS, OTR/L; Marcia J. Opp; Kristine C. Cichowski, MS Home modifications are intended to help a person move within the home more easily and safely and to provide a greater sense of security and independence. Modifications can include: • Changes or additions to the inside or outside structure (e.g. ramps) • Special equipment (grab bars) • Adjusting the location of furniture

There are many benefits to adapting the home: • Increased privacy for daily activities • Increased ability to perform daily activities • Decreased dependence on others • Lower chance of caregiver injuries • Improved quality of life for the person with the disability and family/friends

Planning Home Modifications

Mobility Take a close look at movement around the home (using a wheelchair, walker, walking independently, and climbing stairs). Think about whether there are ways to improve safety and ease.

Ability to Perceive and Understand Consider the ability to sense and recognize the distance of objects, the size or depth of areas or objects, and temperature changes.

Design and Structure of the Home Universal Design (UD) helps people create barrier free living areas. The Center for Universal Design provides standards and options to help people live more independently, such as a lever door handle or power door opener instead of a door knob.

Features that Promote Connections to Friends and Family UD principles also include a term called “Visitability.” Visitability includes design elements such as no– step entrances, usable climate controls and additional space in the bathroom area.

Private funding options and financial assistance may include: • Local clubs and organizations, such as Rebuilding Together, Multiple Sclerosis Society, Habitat for Humanity, Ramp Up Foundation through United Cerebral Palsy (UCP) This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

• Federal income tax deductions for persons and modifications that qualify • Illinois state tax break on some equipment • Fund–raisers • Private foundations • Trust funds • Corporate giving programs • Public appeals

Additional Funding Options Home modifications are not usually covered by insurance companies unless there are specific circumstances such as worker's compensation. Start your search by exploring the agencies listed below. Type in home modification in the search box for various agencies. References: Center for Universal Design Principles: https://www.ncsu.edu/ncsu/design/cud/; Currin ML, Comans TA, Heathcote K, Haines TP. Staying Safe at Home. Home environmental audit recommendations and uptake in an older population at high risk of falling. Australasian Journal on Ageing. 2012 Jun;31(2):90-5. Siefert, Carol. Occupational Therapy Guidelines for Home Modification, AOTA Press 2005:Bethesda, MD. Stark S, Landsbaum A, Palmer JL, Somerville EK, Morris JC. Client-centered home modifications improve daily activity performance of older adults. Canadian Journal of Occupational Therapy. 2009 Jul;76 Spec No:235-45. Funding and Resource Programs --Centers for Medicare and Medicaid Services (CMS) Waivers Medicaid waiver programs vary by state. Check the Medicaid web site on home modifications for information on your state's program. 800-MEDICARE (633-4227) http://www.medicare.gov --U.S. Department of Veterans Affairs Home Improvements and Structural Alterations (HISA) 844-698-2311 https://www.prosthetics.va.gov/psas/HISA2.asp

CHICAGO RESOURCES: --Chicago Mayor’s Office for People with Disabilities (MOPD) - Housing Services HomeMod Program provides assistance to persons under the age of 60 who meet certain eligibility requirements to obtain home modifications. 312-743-1523

63 https://www.cityofchicago.org/city/en/depts/mopd.html --Division of Specialized Care for Children (DSCC) Information and resources on state and federal programs for financing for home modifications. Illinois residents can call the local DSCC office for details http://dscc.uic.edu --Small Accessible Repairs for Seniors (SARFs) Repair types may include grab bars, wheelchair ramps. To see eligibility requirements, see the site: https://www.cityofchicago.org/city/en/depts/dcd/provdrs/afford_hous/svcs/make_your_home_wheelchair accessible.html Return to Top

INSPIRATION AND HOPE Pastoral Care at the Shirley Ryan AbilityLab Author: Rev. Beth Reece

Pastoral care is available for all inpatients at the Shirley Ryan Ability Lab to help meet the variety of spiritual needs that can arise after an injury or illness. Often a hospitalization causes both patients and their families to reevaluate issues of value and meaning in life. Belief systems become more complex and sophisticated as patients face new realities. Chaplains encourage healthy spirituality as a resource for inner strength, hope, health, resilience and personal dignity.

Pastoral Care

Chaplains visit inpatients on a regular basis for individual and family support. They are always “on call” and can be requested to visit at any time. Requests can come from patients, family, staff and community clergy. Chaplains respect the religious views of all patients and support each person’s beliefs. Services can range from a one-time-only visit to on-going, regularly scheduled sessions for individual and family support.

Chaplains provide spiritual assessment, faith counseling, family support and intervention, crisis intervention, grief counseling, and pastoral care in death situations.

Worship Opportunities

Pastoral services encourage people of all religious backgrounds to worship in their own manner. The chaplains and chapel are interfaith, with resources for all patients and their families.

Three worship services are regularly scheduled: an interdenominational Christian service on Sunday morning, 10:15-10:45 AM, Evensong on Sunday evening. 4:30-5:00 PM, and Catholic Mass on Tuesday evening, 6:30-7:00 PM. Jewish Holy Days and Muslim holidays are observed, and other religious rituals or rites may be scheduled.

Complementary Therapies

The Spiritual Care Department also provides weekly meditation and progressive relaxation groups. Privately arranged times for guided imagery, relaxation, and meditation as well as aromatherapy, massage of feet and hands, and Healing Touch© are available upon request.

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LAW Advance Care Planning Talking to a physician, health care provider, hospital social worker or attorney for guidance is a good place to start when making decisions about advance care planning and living wills for yourself or a family member who needs a guardian.

It is a good idea to begin planning for the future as soon as possible. Health care laws vary by state and policies vary by institution. In Illinois, the law gives each person the right to accept or reject medical treatment and the right to give direction, in advance, about the kind of health care desired if the time comes when unable to make your decisions known. ILLINOIS: https://www.illinois.gov/sites/gac/Pages/default.aspx

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Americans with Disabilities Act (ADA): Summary of Key Points Author: Shirley Ryan AbilityLab – Henry B. Betts LIFE Center The Americans with Disabilities Act (ADA) was signed in 1990. This legislation made it a violation of federal law to discriminate against people with disabilities, just as similar civil rights laws protect people against discrimination on the basis of race, gender, national origin, and religion.

The ADA provides equal opportunities for people with disabilities in the areas of employment, transportation, state and local government, public accommodations and telecommunications. It protects anyone in the United States with mobility, visual, or hearing impairments as well as people with cognitive disabilities.

The act is divided into four main sections, called “Titles.”

Title One: Employment

Title One prevents discrimination in the workplace. Private employers who have more than 15 employees, state and local government, labor unions, and employment agencies cannot discriminate against qualified job applicants and employees on the basis of their disability. This means that it is illegal to ask a person about a disability during the employment interview. A person can choose to talk about a disability when asking for changes that will help in doing a job. This includes job restructuring and equipment modifications. If necessary, employers must make some changes to enable the qualified job applicant with a disability to perform the essential functions of the job.

Title Two: State & Local Governments/Transportation/Public Services

Title Two prevents government and other public agencies from denying service to persons with disabilities. This means that government facilities, services, and communications must be accessible and that no one can be prevented from using a program, service or activity because of their disability. The ADA developed rules for new transportation systems, specifying that all new bus and rail cars must be accessible and any new bus or train station must be designed to be accessible for persons who have disabilities. In places where public transportation is not accessible, other types of transportation must be provided. Modes of transportation that are covered include bus, commuter transit, subway and intercity rail systems.

Title Three: Public Accommodations

Public places (restaurants, hotels, theaters, doctors' offices, grocery stores, retail stores, museums, libraries, parks, entertainment venues, social service establishments, schools, day care facilities) may not discriminate on the basis of disability and must be made accessible. New construction and modifications to existing public facilities must be accessible. Existing facilities must try to remove any barriers if possible. If current barriers are not fixable, other ways of providing the service must be found. People with disabilities must have an equal chance to take part in an organization's goods or services.

Title Four: Telecommunications

Telephone companies must provide systems for people who use telecommunication devices for the deaf (TDD) or similar devices. They can not charge extra for these types of service. Organizations must have other ways of providing information that is easily usable and accessible to employees and consumers who are disabled. For more information, see online: https://www.dol.gov/general/topic/disability/ada

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NUTRITION Nutrition Overview Author: Shirley Ryan AbilityLab – Henry B. Betts LIFE Center A healthy diet helps people feel well, including having increased energy, improved sleep and an overall sense of mental and physical well-being. A healthy diet may also speed recovery from illness and even prevent diseases such as cancer, diabetes and heart disease. Follow these basics to create a healthy eating pattern: - Include plenty of fruits and vegetables which contain beneficial nutrients, antioxidants and fiber.

- Choose whole grain foods whenever possible. These are rich in vitamins, minerals and especially fiber. Examples of whole grains are oats, barley, brown rice, and some fiber-rich cereals.

- Sources of protein, such as fish, poultry, eggs, lean meats, beans and nuts build body tissues, support the immune system and promote healing. These foods also supply essential minerals, especially iron.

- Dairy products such as skim milk, yogurt and cottage cheese are healthy as well. They are good sources of protein, vitamins and minerals, especially calcium. Aim for lower fat versions of yogurt, cheese, sour cream and other dairy products when possible.

- Oils and fats are necessary, but should be included in the diet in relatively small amounts. Oils contain essential fatty acids and vitamins, especially vitamin E. The best sources of oils are canola oil, olive oil and the oil found in fish.

- Fluids are necessary for good health too. Fluids can include water, milk, juice and even soups. Liquids help nutrients travel through the body, aid in digestion and regulate body temperature.

Keep in mind that these are general guidelines and many individuals have special dietary needs. For example, someone may need more or less of specific nutrients such as protein, fiber or fluids. If you are confused about what to eat, or have specific questions about nutrition, consult with a registered dietitian or credentialed nutrition professional.

For more information on nutrition and healthy recipes, explore these resources online https://www.hsph.harvard.edu/nutritionsource/healthy-eating-plate/ https://medlineplus.gov/nutrition.html

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PREVENTION Home Safety Tips Author: Shirley Ryan AbilityLab – Fall Prevention Committee There are many ways to prevent falls in the home. Below are listed common risk factors and safety tips.

Environmental Risk Factors (examples) • Hazardous activity (meal preparation, housekeeping) • Time of day (dawn, night) • Lighting (poor lighting) • Clutter (papers, books, clothes, shoes, plants) • Loose cords (telephone, electrical, oxygen tanks) • Rugs (area and wall to wall carpet) • Pets

Personal Risk Factors • Decreased muscle strength • Poor balance or coordination (poor gait, sit–to–stand dizziness) • Visual disturbances (blurred, double, halos) • Mental status changes (confusion, impaired judgment, anxiety) • Dizziness or vertigo • Incontinence • Use of multiple prescribed and over–the–counter medications • Aging • Existing medical conditions (heart disease, diabetes, asthma) • Pain

Reducing Falls at Home

Stairs • Repair any worn carpet or broken steps and railings. • Install railings.

Lighting • Install night lights, overhead lights or higher watt bulbs. • Make sure you can reach a light from bed. Always turn lights on when getting in or out of bed. If necessary, use a remote control to turn lights on and off from across the room. • Add bright strips of tape to each step for better visibility. • Keep a charged flashlight near the bedside for emergencies.

Eliminate risk factors • Remove items from the floor. • Keep pathways inside or outside the home clear. • Remove throw rugs or fasten with adhesive to floor. • Keep pets in an enclosed area or clear from walking areas • Keep items within easy reach between hip and eye level. • Organize space to minimize stooping or reaching (consider using a long handled grabber or reaching tool). • Use a sturdy step stool for reaching overhead. • Keep floors dry and wipe up spills immediately.

Bathroom • Use nonskid bathtub or shower mat. • Sit and use a nonskid shower chair and hand–held shower head. • Install grab bars or handrails in shower. • Have a phone in the bathroom to use in case of a fall.

Furniture • Use sturdy furniture with strong back supports. • Use arm rests for support while getting in and out of chairs. • Avoid chairs on coasters/wheels.

Phone • Keep phone easy to reach in case of emergencies. • Keep emergency phone numbers readily available.

For overall health and safety • Review medical condition regularly with your health care provider. • Have regular checkups as needed (such as vision and hearing). • Keep a current record of all medications. This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

• Recognize your abilities and limitations. • Whenever in a new environment, assess potential risk factors and identify necessary safety measures.

Consider an emergency call system There are two general types available. In both cases the user wears a pendant with a small button which is pressed in the event of an emergency.

Direct help system (monthly fee) Pressing the button connects the user directly to an operator who is able to deal with personal medical condition.

Indirect help system (one time fee) Pressing the button activates a recorded message which is sent to the set numbers of friends or relatives. The person receiving the call then takes the necessary steps to get help.

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Preventing Falls in the Hospital Author: Shirley Ryan AbilityLab – Fall Prevention Committee

A number of factors can contribute to falls in the hospital including:

• Visual problems • Dizziness, unsteady walking, and balance problems • Incontinence • Fatigue • Physical weakness and changes in physical ability • Lack of awareness of disability • Disorientation • Inability to understand and follow directions • Inability or unwillingness to ask for assistance or supervision • Moving quickly without thinking • Climbing in and out of wheelchair • Restlessness • Side effects of medications

Many falls are preventable. To increase safety these practices are followed: • Bed is kept in the lowest position possible with brakes locked at all times.

• Call light, bedside table, phone and bed controls are within reach. • All equipment including wheelchairs is removed from bedside when patients are in bed unless the patient is independent in self–care and mobility. • Two side rails are up at all times. • Room is free of clutter and walking space is clear. • Wheelchair is locked for all transfers. • Patient and families are taught about fall risks during their stays.

How patients can help prevent falls: • Wearing eyeglasses as needed. • Wait for help from staff. • Take rest periods between activities. • Inform staff of any changes in mental or physical ability. • Maintain a quiet environment.

Due to special needs, some patients may require individualized fall prevention measures. Patients at high risk for falls are put into the “Yellow Dot” Program. A yellow dot is placed on the room nameplate, above the bed and on the back of the wheelchair. These additional fall prevention methods are for staff and family:

• Make sure an enclosure bed is zipped before you leave. • Notify staff when leaving and to turn on the bed exit alarm when leaving. • Place call light within reach. • Make sure two to three bed rails are up at all times. • Use all forms of safety belts while in wheelchair. • Inform all visitors about safety plan. • Use night light when appropriate.

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Preventing Fatigue at Home and Work Author: Shirley Ryan AbilityLab – Fall Prevention Committee By slightly altering the way tasks are done, you can save energy and feel less tired. The following are some suggestions for simplifying tasks and conserving energy.

Find ways to do less work • eliminate unnecessary tasks such as making the bed daily

• combine or eliminate steps of a task • delegate work to others • use professional services for heavy cleaning, laundry, lawn work, etc.

Organize work areas • store frequently used items within easy reach • gather all items at work area before beginning a task

Pace yourself • work at a steady, moderate pace • allow frequent, short rest breaks rather than one long break • rest before becoming fatigued

Plan ahead • do heavy tasks over several days • alternate light with heavy work • alternate active and quiet tasks (e.g. vacuuming and paying bills)

Practice taking care of your body • sit down to do work whenever possible • lift correctly: back straight, bend at hips and knees rather than waist • avoid straining, reaching and twisting • work at proper height to eliminate bending or stooping • use a cart, wagon or basket to gather and carry items • slide or push objects rather than carrying them • when carrying, use both hands and hold close to the body

Use the best tools for the job • select the right tools to match what you are trying to do • use lightweight equipment when possible such as cookware, vacuum, etc. • take advantage of power equipment such as mixers, electric can opener, battery powered drill or screwdriver, etc.

For more information, consult with your occupational or physical therapist.

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RECREATION AND LEISURE Accessing Your Community Author: Lisa Rosen, MS Before acquiring a disability, most people pay no attention to steps into a building, whether a public bathroom is wide enough for a wheelchair, or distance to travel within a building. Sometimes, the basic entrance into a place of business can determine whether your participation is easy or hard. With a little bit of planning, someone with a disability can move more easily back into community activities. Below are a few tips from people who have met the challenge:

First, call ahead and verify if the layout is accessible to your situation. Don't assume that because a building meets accessibility standards all areas will meet your needs.

Is the building accessible? •Are there any steps at the entrance or within the facility? •Are the doors wide enough to accommodate a wheelchair? •Are elevators available, and if there are only escalators, will they accommodate a wheelchair? •Where is the accessible entrance? If the main entrance is not accessible, is there an alternate entrance? You may have to enter through a back door or side entrance where a ramp is located. •Are there any special directions to consider? For example, the ramp may be very steep or you may be required to locate an attendant to open a locked door or use the elevator. •Are there curb cuts close to the entrance?

Are special accommodations offered? •Does the supermarket have a scooter available? •Does the store have staff designated to provide assistance to reach high items or read fine print? •Does the theater, church or synagogue have headsets for the hearing impaired? •Is integrated seating available? Can accessible seats accommodate your companions or friends in the same area?

What about parking? •Find out how many accessible parking spots are available. Some buildings may only designate one parking space for the entire building. •Is there alternative parking if the accessible spot is occupied? •Is discounted parking available?

Can restrooms accommodate your wheelchair? •Are the grab bars located in the right place for you? •Is there enough room to maneuver in the restroom?

Eating out •Are tables available for comfortable seating? •In a self service restaurant, are the utensils at an accessible height? •Are reservations necessary? It is helpful to identify your access needs when making a reservation and to know the name of the person you spoke to.

After you have decided what to do and how to go about it, it is important to listen to your body to determine how to plan the activity. •Plan activities for early in the day when you have the most energy. •Know your limits. It may be helpful to plan rest periods between activities to conserve energy. •Try to differentiate good days from the bad days – in advance – by watching for warning signs and symptoms. •Consider the weather and how it affects your functioning. In warmer weather confine most rigorous activities to the cooler times of the day. Try to avoid prolonged exposure to the sun. •Learn to recognize what helps you relax as it will relieve stress, pain and aid muscle function during an activity.

It is important to understand your body and its unique needs when planning to get out. Don't set yourself up for disappointment by not taking the time to consider these tips. You want to make each of your outings to be as successful as possible. Remind yourself, friends and family that it may take extra time to get around. The more often you go out, the sooner you will learn new ways of getting around and these issues will be second nature in your thinking.

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Expanding Your Social Network Author: Lisa Rosen, MS Everyone is looking for friendship and support – it is part of human nature. Reaching out to others takes the focus away from ourselves, and provides an opportunity to live life to the fullest.

A life–changing event, such as an injury or disability, can leave a person or family feeling alone and feeling that no one understands what they are going through. Some people report feeling overwhelmed by a new disability and all the things that must be learned.

Interacting with past friends may be awkward. It is not unusual for people to stop visiting because they don't know what to do or say. As a result, many people begin focusing on themselves and all the things This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

75 that have changed or are not in their control. All of this can increase isolation. The following examples show how others have coped with this situation.

Judy Panko–Reis, a wheelchair user who had a head injury due to violence:

“Many people are scared; others feel stranded by the lack of transportation and caregiving resources. Some have lost friends and others don't have a clue on how to make new friends. For example, I had no new friends – disabled or able bodied – for at least 10 years. First, I had lost my ability to drive and walk, secondly transit options were terrible. And when I finally got involved with others to improve transit options for the disabled I got a double surprise; my transit options improved and I made a new set of friends. If you sit home and focus on all of the negatives, you will NEVER have a chance for improvement or building new relationships.”

Karen Boyd, a wheelchair user with congenital cerebral palsy:

“Children come up to me and ask, ‘What's wrong?' and the parents tell them ‘Don't ask her that' or ‘Be quiet!' and I will say ‘Please don't stop your child from asking me what's wrong. Don't be afraid to ask questions; if you don't ask, how can a child ever learn that it's okay to be different.' By taking this extra time to explain my disability or why I am in a wheelchair, I am connecting with others in a positive way and helping educate them. Then the next time they see someone who is different, they will see the person first, not the disability.”

Research has shown that individuals who have people around them to assist and show concern generally experience a higher level of well–being. It may be family, friends, coworkers or neighbors. We are all part of a community. Connecting with others helps avoid isolation and reduces the risk of depression. Here are some helpful tips on how to get started.

• Focus on what you are able to do rather than what you can no longer do.

• Make a list of things you like to do and how you can help others. This will increase your self–esteem as you see that others can benefit from your abilities and knowledge.

• Plan the amount of time to be spent on an activity. Stick to it and leave when you still feel good.

• Surround yourself with supportive people.

• Keep a gratitude journal to remind you what really matters in your life.

• Set realistic goals and include others; sharing goals and accomplishments helps you stick to your plan. Once you start this process you will feel the effects of the love you have inside yourself, and it will motivate you to continue.

Treat your body with respect. Honor yourself and your abilities. This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

• Keep a sense of humor, learn to laugh at yourself and be flexible to roll with the punches. • Use healthy ways to manage stress such as meditation, relaxation techniques and exercise. • Avoid excessive alcohol, caffeine, smoking, drug use and overeating.

Take initiative. • Take the initiative to turn an acquaintance into a friend. How often do people say “We should get together” or “I'll call you”, and then never do. Use that opportunity and make the call. It may feel awkward at first but really, what do you have to lose? So what if they say no; move on to the next opportunity.

• Get an email or phone number and call within the next two days. Or just get out your date book and set something up. The first time you might meet for coffee or to listen to a speaker. It is easier to get to know someone when doing an activity together; it provides something to talk about, and takes the pressure off of trying to make constant conversation.

• If you are homebound, ask a friend over for a visit.

• Don't be afraid to go somewhere or do something alone.

• Accept your fears and take a risk. You may fail but just pick yourself up and try again. Soon, you will have more successes and fewer failures and others will look to you for guidance and support

Try not to be your own worst enemy. • Negative self–talk is extremely harmful to well being. If you are continually telling yourself that you can't do something, then you probably won't.

• Raise your expectations. If one expects little, one achieves little.

• Practice is most helpful for change. You're worth it!

Smile! Show people the real you. • People are naturally attracted to others who are warm and inviting.

• Be thoughtful; do things for others. Keep a journal to remember important dates such as birthdays and acknowledge these occasions.

• Keep a candy bowl at your work area to draw people and provide a chance to talk.

• Volunteer at a local school, church, shelter or other group. Be a mentor.

Get out there! • You have to be around people to meet people. It can be at the hospital, park, support group or even the waiting room of a doctor's office. Make eye contact and don't be afraid to strike up a conversation. You This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

77 never know whom you will meet.

• If you are homebound, use the telephone or internet – not just the TV!

• The best way to meet others is while enjoying our own hobbies and passions. This helps connect to those with similar values and interests. Take some time and identify what interests you most. If you are interested in sports, join a team. Locate a book club, wheelchair dance, meditation group, religious group, choir or outdoor activities such as hiking or gardening. The options are endless.

The art of conversation. • Sometimes it's hard to start. Try to both offer information and ask questions.

• Be a good listener. If small talk is difficult, the information you get from listening can help you with your questions. For instance, if someone says that they just moved here, there are several opportunities for getting to know the person. Try to ask open–ended questions such as, “What brought you here to Chicago?” That allows the person to answer the question in a way that feels comfortable. They may give information that can help you learn more about them. It can also help them get to know you. Maybe you know someone where they used to live and have something in common.

The best way to make and keep a friend is to be a friend. Once a connection has been established, it must be maintained and cultivated. This takes intention, attention, courage, creativity, time and caring. These things are an effort, but the rewards are rich, and friends can make the intolerable tolerable.

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Making the Most of Your Free Time Author: Lisa Rosen, MS Many people with a disability and their families face challenges in managing day to day life. In fact, it may feel as though the world has been turned upside down. Your daily schedule may be totally different from before and your social life may have changed.

In the midst of these changes, the last thing you may be thinking about is how to spend your free time. Yet, how you feel about ways to spend your free time can have a big impact on how you feel about yourself and your outlook on life. Here are some tips to help you make the most of your free time.

Start by looking at a typical day. Map out a schedule by breaking down the day into meaningful parts. Look at your required tasks or obligations such as self–care, eating, home exercise program, and appointments. This is “structured” time.

Then look at the other parts of the day that are free – “unstructured” time. You may have more unstructured time than before because of a different work schedule or because of not being employed.

It is easy to feel overwhelmed when looking at the day and not knowing what to do, but remember that you are in control. Tackle one day at a time. Know that this is an evolving process and be open to schedule changes. This will help you manage your time and turn unstructured time into planned and productive activities. Here is how some people with various disabilities tackle the challenge.

Fill “unstructured” time with planned activities . Treat each day as an opportunity to connect with someone, try something new, or go somewhere. Don't wait for things to happen. Take the lead and plan an activity or a group of activities each day. Look at your daily schedule and fill in the gaps.

Pick up the phone and call someone. Don't wait for people to call you. At the same time, don't take it personally if someone doesn't get back to you right away. Don't isolate yourself. Connecting with people, places and your community can inspire you to enjoy each day.

Utilize social media. Set up a Facebook page, Twitter account or organize a blog so you can connect with friends more easily and become acquainted with others who have similar interests.

Find out what your interests are by taking a look inside yourself to determine what makes you happy or what is important to you. Is it developing a new hobby or making adaptations to an old pastime?

Be open to new ways of enjoying free time. Don't brush off something you used to enjoy just because your ability to participate in it has changed. Millions of people with disabilities engage in all types of activities including sports, music, dance, drama, and outdoor pursuits. A person with quadriplegia, for example, can still go fishing or sailing and can even paint. Be willing to explore new adaptive equipment that may help you resume doing things you love. Discover what you can do and try not to focus on what you are no longer able to do.

Get ideas from people who have been there and have gone through a similar situation. There are lots of ways to connect with people who can give you tips on getting through the day. You may find it helpful to connect with a support group, take a class through a special recreation association, or join a travel group. There is help out there; don't be discouraged.

Here are a few things to think about as you explore the things you love to do:

Do you like to be physically active? Contact your local park district or special recreation association to find out what is available. The Rehabilitation Institute of Chicago Adaptive Sports and Fitness Program offer many options for individuals with disabilities, including skiing, sports, competitive swimming, and weight training.

Do you enjoy challenging your mind? Try going to the local library, using the Internet, completing a word game in the newspaper, or writing poetry. This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

Do you like to work with your hands? Try model building or expressing your creativity by drawing, baking, or gardening.

How about spending time with friends or family? Invite people over for a visit or plan to visit them. Share a meal, a snack, or some time to play a game or hobby.

Do you have any special talents like photography or singing? Don't be shy to engage in these at home or join groups with similar interests, like a choir, a garden club, or chess club.

Would you like to be a mentor to a teen or child, or another person with a disability? Perhaps you could read to a kindergarten class, volunteer, or join a support group.

Having fun doesn't have to cost a lot of money. Look in the community for events and activities that are free. For instance, most museums have free admission days. During the summer months there are often free concerts or festivals offered through the local park system.

Remember, each day we get a fresh start. Don't be afraid to make the most out of yours. You're worth it!

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Recreation Programs for People with Disabilities - Nationwide --National Center on Health, Physical Activity and Disability (NCHPAD) The National Center on Health, Physical Activity and Disability (NCHPAD) identifies recreational resources for people with disabilities both nationally and internationally. Resources include: organization directories, accessible recreation programs and facilities, adaptive equipment vendors, and links to journal articles, books, videos, and more. Fact sheets are available on a variety of activities for people with disabilities, fitness professionals, health professionals and researchers. http://www.nchpad.org/

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Shirley Ryan AbilityLab Adaptive Sports and Fitness Program

Our Sports Program welcomes athletes of all skill levels, from those interested in learning a new recreational sport to athletes wishing to hone their craft for elite-level competition. And, while we have a long history of developing athletes who have gone on to compete and medal in the Paralympic Games, the majority of our athletes participate at the recreational level or to compete in local and regional competitions.

Our Fitness Programs offer our members a well-equipped fitness center designed for people of all abilities--a broad selection of fitness services and classes to help people remain active and achieve their fitness goals, and an expert staff. All programs are led by exercise physiologists who, at a minimum, hold a bachelor’s degree in exercise science or related field and are Certified Inclusive Fitness Trainers (CIFT).

Hours of Operation: Monday – Friday, 6:15 am –7:00 pm Address: 541 N Fairbanks (accessible entrance on Ohio)

For more information: https://www.sralab.org/services/adaptive-sports-and-fitness-program 312-238-5001

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Special Recreation Associations of Illinois There are many Special Recreation Associations in Illinois. Year-round programs include social clubs, local trips, day camps, sports/fitness, music/dance, arts/crafts, travel and special events for persons with disabilities of all ages. For more information, check the resource online: http://specialrecreation.org/home.html

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Therapeutic Recreation Services for Inpatients at the Shirley Ryan AbilityLab Author: Shirley Ryan AbilityLab – Therapeutic Recreation Department

Therapy does not have to be all work and no play. Through Therapeutic Recreation, patients build upon physical skills from other therapies, resume previous recreational interests, learn new ones, and move forward on the path of mental and emotional healing through different leisure activities. These benefits are very important to the recovery process and your whole being because they allow you enjoy the activities you love and just be yourself. You also have the chance to meet new people, many of whom face the same challenges you do. Inpatients and families can explore various fun and therapeutic opportunities through music therapy, art therapy, animal-assisted therapy and recreation activity programming

What makes Therapeutic Recreation at the Shirley Ryan AbilityLab unique?

 Animal assisted therapy  Using accessible Chicago Transit Authority trains and buses  Adaptive Sports & Fitness Program  Exploring accessible activities such as movies, cultural events and outdoor recreation

Our therapeutic recreation staff works closely with you and your loved ones to help find activities and events that match your interests and help you meet everyday needs (for example, commuting on the train or safe money handling).

Contact information: https://www.sralab.org/services/therapeutic-recreation-0

312-238-3980

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REHABILITATION SERVICES Adjusting to an Inpatient Rehabilitation Hospital Author: Shirley Ryan AbilityLab Any new environment can feel upsetting and confusing. The rehabilitation hospital is also unique in that you might have recently experienced an injury that involved changes in your ability to perform normal activities. As a result of these changes, it is common for people to feel emotionally upset at the time of entering a rehabilitation program. Signs of emotional distress can include feelings of depression and anxiety, restlessness, impatience, worry, withdrawal, poor concentration, sleep and appetite problems, and low self–esteem. These feelings often decrease as you become more familiar with the rehabilitation setting. You may also meet with a psychologist to help in coping with these feelings.

There is generally no one “best” way to cope with a rehabilitation hospitalization. Each person develops his or her own ways of dealing with stress over the years. There are, however, a number of things that can help in managing this experience.

Take charge of the situation wherever you can.

Patients who are active in their medical care, and participate in treatment decisions are more likely to feel better emotionally.

Ask questions as they arise, and state your preferences about treatment. In rehabilitation, it is important to let your therapists know what you want to work on during your stay.

Look for ways to express your feelings.

Everyone has different ways to express feelings, and with whom.

Often patients feel relieved if they discuss their situation, and how they feel about it, with another person. This may include talking to family or friends or with a mental health professional.

Seek support from family, friends, other patients and staff.

Separation from loved ones can make a hospital stay difficult and lonely. Have visitors come at times when you are not in therapies and feel sufficiently rested to enjoy the time together.

Find ways to “get away” and relax.

Although it is difficult to “relax” in the hospital in the same way that you would at home, it is important to find ways to occupy your time when you are not in therapies. Perhaps, this may be things that you have used in the past, such as reading, listening to music, and having quiet time to yourself.

Rehabilitation hospitals often have recreational therapists on staff that can help you with recreational activities, or help you adapt your previous interests.

Be mindful of your spiritual side.

Spiritual belief and faith can be an important source of emotional strength and comfort while being in a hospital. Rehabilitation hospitals often have clergy on staff for visits with patients, and scheduled religious services. Ask any staff member for details.

Rehabilitation Goals and Treatment

Goal setting is another way of deciding how you want to change. For example, your goal may be to walk and have a better memory. Each therapist also has goals for you. It is a good idea to talk about how your goals fit with the therapists' goals. Each goal, no matter how simple it sounds, is more complex than it seems.

Therapy may start out with goals that prepare you to move forward. Sometimes they seem silly, or too easy, or not what you want to do. Ask the therapist how their goal can help you achieve your goal. In some cases, it can take months, or even years, to achieve all goals, so some may be the focus later during outpatient therapies. In other cases, it will not be possible to reach all of your goals.

It is important to continue to work with your therapists and not give up hope or effort.

Role of Family

Family members play an important role in the rehabilitation process. They are a source of emotional support. They provide news on family developments, and help you maintain your place in their family. Rehabilitation settings are unusual in that family members may be called upon to learn directly about how to care for you and support your independence once you leave the hospital. Family members meet with care managers before discharge to plan follow up care and appointments.

Family members often watch during therapy to get a better idea of your progress, and how you might need assistance.

Finally, it is important to recognize that being in a hospital can be stressful for your family and close friends as well as for you. They too need to take care of themselves by relying upon their own social networks, and taking time away to rest and relax.

Communicating with the Treatment Team Good communication takes times and the hospital staff may seem in a rush. The medical team comes by every morning. This is a good opportunity to ask whatever questions you have. It may help to make a list of questions in advance; otherwise it can be easy to forget. If you feel uncomfortable talking about personal issues when others are present, ask the doctor or therapist to set aside a few minutes to speak with you privately.

Providers often use medical language and terms without realizing they are difficult to understand. Please ask your team members to explain anything you do not understand.

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Inpatient Rehabilitation Care: Description of Rehabilitation Roles Author: Shirley Ryan AbilityLab – Henry B. Betts LIFE Center Inpatient rehabilitation is provided by a multidiscipline treatment team which is directed by a Physiatrist (rehabilitation doctor). The rehabilitation team is composed of a variety of specialists depending upon a person’s individual needs and goals. The team works with patients and significant others to identify goals, discuss progress, and create an individual treatment plan focused on restoring and maximizing ability.

Therapy programs occur Monday through Friday and some holidays. Patients receive a schedule each day that shows the time, location and type of therapy. It is typical to start with three hours per day including individual and group sessions. Attendance is required for all sessions.

Family and significant others play an important part of care and recovery. In addition to being a major motivator, family involvement ensures skills learned in therapy are continued in daily routines and healthy lifestyles are maintained after discharge. There are many aspects of care that need to be learned before discharge. Patient schedules will also include patient and family education sessions in order to help family members in developing care knowledge, skill and adjustment. Active and consistent participation of family is a vital component of rehabilitation success.

Each week the Physiatrist and team members meet and discuss patient treatment programs in a Team Conference. Based upon progress and needs, the team develops a plan to support patients and families in preparing for discharge. Team discussion includes: health status, goals, progress, weekly therapy, patient and family education needs and discharge plan.

Members of a Rehabilitation Team are selected based on specific needs and may include:

Physiatrists (Rehabilitation Physicians)

Doctors in the rehabilitation field who receive advanced training and certification in physical medicine and rehabilitation. “Physiatrists are experts on how nerves, muscles, bones and the brain work together. They look at the whole person, not just one symptom or condition.” 1 Inpatient Physiatrists manage medical care and oversee progress in therapy. In teaching hospitals, patients may also be seen by a resident physician – a medical doctor in training to specialize in physical medicine and rehabilitation or neurology. After discharge, the rehabilitation physician continues to provide and direct outpatient rehabilitation care. Patients should also maintain an internal medicine or family practice doctor for other, general medical needs.

Nurses Rehabilitation nurses are very involved in teaching both patient and family about care needs and routines and have a variety of responsibilities: • monitor and oversee daily care; • teach and help patients and families practice care routines; • administer medication and teach patients and families about scheduled use and possible side effects; • collaborate with other team members regarding rehabilitation goals and needs for community reentry. Note: At many facilities, a nursing assistant also provides for dressing, hygiene needs and assistance with feeding.

Care Manager The Care Manager coordinates discharge plans and communicates with insurance or other payers about benefits. The Care Manager shares this information with the rehabilitation team to develop a plan that maximizes the rehabilitation stay. The care manager may have a background in either social work or nursing.

Social Worker The social worker works with both patient and family in identifying care and transition needs to ensure a smooth discharge: • evaluating support system and home needs; • helping access community resources such as financial entitlements, home care and transportation; • providing information about other types of care; • counseling about adjustment issues related to disability.

Occupational Therapist (OT) The OT checks current abilities and develops a treatment plan for meeting goals in Activities of Daily Living (ADLs) including: • self–care, such as dressing and bathing; • leisure, such as hobbies; • work–related tasks; • problem solving to accomplish any of the above; • fine-motor skill development and strengthening, such as hand and arm exercises; • if necessary, identify alternate ways with or without equipment to accomplish daily tasks.

Physical Therapist (PT) The PT checks current physical abilities and develops a treatment program for meeting goals in: • mobility needed for activities of everyday life such as exercising muscles and joints, moving in bed, using a wheelchair, transferring (for example, from the wheelchair to the car) and walking with or without equipment; • performing mobility skills and exercises; • selecting and ordering any equipment for discharge.

Speech Therapist/Speech–Language Pathologist The speech–language pathologist works on communication skills including: • listening, understanding and remembering what is heard in a conversation; • thinking quickly and putting thoughts into words; • sounding out words and explaining ideas; • reading, understanding and remembering what is read; • writing and putting thoughts into writing; • if necessary, chewing and swallowing food since this involves the mouth and the throat.

Neuropsychologist The neuropsychologist tests for thinking abilities and provides help with: • understanding the links between brain injury, brain functioning and behavior; • attention, memory, problem–solving skills, language skills and other areas of thinking; • vocational recommendations; • adjusting and coping with changes from a brain injury.

Psychologist The rehabilitation psychologist meets with patients, family and significant others to help with adjustment to hospitalization and disability. The psychologist collaborates with the rehabilitation team to support psychological and interpersonal functioning.

Therapeutic Recreational Specialist The therapeutic recreation specialist helps patients and families in applying skills learned in rehabilitation to activities that support their personal growth and active community participation: • developing self-confidence and comfort in social situations both at home and in the community; • experiencing individual and group activities to practice skills and develop strategies to nurture friendships and social support networks. Examples: athletics, travel, music, art, and hobbies as well as trips to restaurants, theaters and sporting events. • finding new ways to pursue old interests through adaptations; • identifying new areas of interest;

Vocational Rehabilitation Specialist The vocational specialist assists with concerns and needs for returning to school or work: • meeting with and educating employer or school staff regarding needs for reasonable accommodations; • identifying educational or employment opportunities of interest; This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

• developing strategies for work or school reentry.

Chaplain When a life–changing event occurs, spiritual needs may become heightened and yet they may be difficult to express. The chaplain can help with spiritual support during a hospital stay.

Clinical Dietitian The clinical dietitian evaluates nutritional needs based on physicians' orders and medical condition. This can include: • help with special diets as prescribed; • general information on maintaining a healthy diet.

Prosthetist/Orthotist Prosthetists and orthotists provide care for anyone requiring an artificial limb (prosthesis) or device to support or control part of the body (orthosis). • Prosthetists design and provide limb replacements. • Orthotists provide splints, braces and special footwear.

Respiratory Therapist (RT) The RT helps with any breathing difficulties with may limit participation in other treatment activities. • measure needs for supplemental oxygen and fit proper equipment; • use treatments to help with coughing and keeping lungs clear; • administer medications to open airways; • work with necessary equipment. Return to Top

RESPIRATORY CARE Respiratory System and Care Author: Shirley Ryan AbilityLab – Nursing Practice Council Breathing is the action of moving air in (inhalation) and out (exhalation) of the body. During breathing, oxygen in the air enters through the nose and mouth and travels to the lungs. The diaphragm moves down and the muscles around the ribs push out, expanding the chest. From the lungs, oxygen moves through the body to all organs, tissues and cells. During exhalation, the muscles relax and carbon dioxide, the waste product of breathing, is eliminated. The delivery of oxygen and elimination of carbon dioxide is vital to life.

Respiratory Terms

• Lung : Main organs of breathing. • Diaphragm : Large muscle at base of the lungs. • Intercostals : Muscles located along rib cage. • Trachea (windpipe) : Air passage to lungs. • Tracheotomy : Artificial opening from the neck into the trachea; helps breathing and can protect airway. • Tracheostomy tube (trach) : Tube inserted into tracheotomy for air movement. • Fenestrated tracheostomy tube : Has an opening that lets air move in and out of the lungs through nose and mouth. Inner cannula : Inner, removable part of tracheostomy tube. • Postural drainage : Positions that help drain secretions (mucus) from lungs. • Respiratory rate : Number of breaths per minute – about 12 to 20 • Pneumonia : A disease of the lungs. • Aspiration Pneumonia: The entrance of a foreign substance into the lungs. • Pulmonary embolism : Blood clot in the lungs.

Respiratory Problems Respiratory problems may occur with various disabilities. Just like weakness in limbs, muscles for breathing may be weakened or not work properly. Examples of respiratory problems: • Decreased ability to prevent substances other than air, such as saliva, food, or fluid, from entering the windpipe. • Mucus accumulation in lungs due to difficulty taking deep breaths or staying in one position for long periods.

Basic suggestions for respiratory care • Drink at least six cups (8–oz) of fluid each day. Fluids help keep mucus thin and easier to cough up. • Take deep breaths to help keep the lungs and muscles working. • Change body position often to prevent mucus build up. • Follow any dietary guidelines provided by your physician or therapist. • Practice blowing bubbles and blowing up balloons. • If instructed, use a spirometer or other breathing exercise equipment.

NOTE: Use the information below to help avoid respiratory problems.

Chest congestion or colds • Breathe deeply. This opens the lungs and prevents mucus build up. • Use a room humidifier. • Call the doctor if fever is more than 101.5, or if a cold does not get better.

Pneumonia Signs of pneumonia, an infection in the lungs, include: • Change in respiratory rate – either very fast or very slow • Difficulty or shallow breathing • Chills or fever This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

• Coughing • Chest congestion or chest pain. • Confusion.

NOTE: If you experience these symptoms, call the doctor or 911. Lifting the head of the bed, or using extra pillows can also ease breathing.

Preventing pneumonia • Take deep breaths, using as many muscles as possible. • Do breathing exercises as instructed by the doctor, nurse or therapist. • Change position at least once every two hours, even if in bed.

Aspiration pneumonia Signs of aspiration pneumonia: •Coughing •Shortness of breath •Wheezing •Chest discomfort •Confusion •Excessive sweating, and/or fever, chills •Difficulty swallowing.

NOTE: If you experience these symptoms, call the doctor or 911.

Preventing Aspiration pneumonia • Elevate the head of the bed at least 30 degrees or higher. • Do breathing exercises as instructed by the doctor, nurse or therapist. • Change position at least once every two hours, even if in bed. • Conduct oral hygiene at least 3 times a day to decrease bacteria in your mouth.

Pulmonary Embolism (PE) Signs of PE: • Difficulty breathing/ shortness of breath • Rapid breathing • Chest pain • Bluish or dusky color in face area • Confusion • Increased/ racing or irregular heart beat • Sense of doom or anxiety • Light–headedness.

NOTE: This is a serious emergency. Call 911 immediately for help.

Preventing PE • Keep as active as possible. • Take all medicines as prescribed by the doctor. In some situations, blood–thinning medications are used to prevent clots.

References: Alexander, T., Hiduke, R., & Stevens, K. (1999). Rehabilitation Nursing Procedures Manual. 2nd edition. NYC, NY: McGraw-Hill.

Quinn B, Baker DL, Cohen S, Stewart JL, Lima CA, Parise C. Basic nursing care to prevent non- ventilator hospital-acquired pneumonia. Journal of Nursing Scholarship. 2014;46(1):11-9.

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Vaccine Overview: Pneumococcal Polysaccharide Vaccine – CDC Info Sheet This information sheet from the CDC gives a basic overview of the risk factors for pneumonia, prevention methods and details on who should have the pneumococcal polysaccharide vaccine (PPV).

Pneumococcal Polysaccharide Vaccine: What You Need to Know

Many Vaccine Information Statements are available in Spanish and other languages. See www.immunize.org/vis. Hojas de información Sobre Vacunas están disponibles en español y en muchos otros idiomas. Visite http://www.immunize.org/vis.

1. Why get vaccinated?

Vaccination can protect older adults (and some children and younger adults) from pneumococcal disease.

Pneumococcal disease is caused by bacteria that can spread from person to person through close contact. It can cause ear infections, and it can also lead to more serious infections of the: • Lungs (pneumonia), • Blood (bacteremia), and • Covering of the brain and spinal cord (meningitis). Meningitis can cause deafness and brain damage, and it can be fatal.

Anyone can get pneumococcal disease, but children under 2 years of age, people with certain medical conditions, adults over 65 years of age, and cigarette smokers are at the highest risk.

About 18,000 older adults die each year from pneumococcal disease in the United States.

Treatment of pneumococcal infections with penicillin and other drugs used to be more effective. But some strains of the disease have become resistant to these drugs. This makes prevention of the disease, through vaccination, even more important.

2. Pneumococcal polysaccharide vaccine (PPSV23)

Pneumococcal polysaccharide vaccine (PPSV23) protects against 23 types of pneumococcal bacteria. It will not prevent all pneumococcal disease.

PPSV23 is recommended for: • All adults 65 years of age and older, • Anyone 2 through 64 years of age with certain long-term health problems, • Anyone 2 through 64 years of age with a weakened immune system, • Adults 19 through 64 years of age who smoke cigarettes or have asthma.

Most people need only one dose of PPSV. A second dose is recommended for certain high-risk groups. People 65 and older should get a dose even if they have gotten one or more doses of the vaccine before they turned 65.

Your healthcare provider can give you more information about these recommendations.

Most healthy adults develop protection within 2 to 3 weeks of getting the shot.

3. Some people should not get this vaccine

• Anyone who has had a life-threatening allergic reaction to PPSV should not get another dose.

• Anyone who has a severe allergy to any component of PPSV should not receive it. Tell your provider if you have any severe allergies.

• Anyone who is moderately or severely ill when the shot is scheduled may be asked to wait until they recover before getting the vaccine. Someone with a mild illness can usually be vaccinated.

• Children less than 2 years of age should not receive this vaccine.

• There is no evidence that PPSV is harmful to either a pregnant woman or to her fetus. However, as a precaution, women who need the vaccine should be vaccinated before becoming pregnant, if possible. This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

4. Risks of a vaccine reaction

With any medicine, including vaccines, there is a chance of side effects. These are usually mild and go away on their own, but serious reactions are also possible.

About half of people who get PPSV have mild side effects, such as redness or pain where the shot is given, which go away within about two days.

Less than 1 out of 100 people develop a fever, muscle aches, or more severe local reactions.

Problems that could happen after any vaccine:

• People sometimes faint after a medical procedure, including vaccination. Sitting or lying down for about 15 minutes can help prevent fainting, and injuries caused by a fall. Tell your doctor if you feel dizzy, or have vision changes or ringing in the ears.

• Some people get severe pain in the shoulder and have difficulty moving the arm where a shot was given. This happens very rarely.

• Any medication can cause a severe allergic reaction. Such reactions from a vaccine are very rare, estimated at about 1 in a million doses, and would happen within a few minutes to a few hours after the vaccination.

As with any medicine, there is a very remote chance of a vaccine causing a serious injury or death.

The safety of vaccines is always being monitored. For more information, visit: www.cdc.gov/vaccinesafety/

5. What if there is a serious reaction?

What should I look for?

Look for anything that concerns you, such as signs of a severe allergic reaction, very high fever, or unusual behavior.

Signs of a severe allergic reaction can include hives, swelling of the face and throat, difficulty breathing, a fast heartbeat, dizziness, and weakness. These would usually start a few minutes to a few hours after the vaccination. This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

What should I do?

If you think it is a severe allergic reaction or other emergency that can’t wait, call 9-1-1 or get to the nearest hospital. Otherwise, call your doctor.

Afterward, the reaction should be reported to the Vaccine Adverse Event Reporting System (VAERS). Your doctor might file this report, or you can do it yourself through the VAERS web site at www.vaers.hhs.gov, or by calling 1-800-822-7967.

VAERS does not give medical advice.

6. How can I learn more?

• Ask your doctor. He or she can give you the vaccine package insert or suggest other sources of information. • Call your local or state health department. • Contact the Centers for Disease Control and Prevention (CDC): - Call 1-800-232-4636 (1-800-CDC-INFO) or - Visit CDC’s website at www.cdc.gov/vaccines

Vaccine Information Statement PPSV

Department of Health and Human Services Centers for Disease Control and Prevention Return to Top

SEXUALITY AND REPRODUCTION Sexual Health - Overview

Author: Shirley Ryan AbilityLab – Henry B. Betts LIFE Center A life changing event, such as a stroke, spinal cord injury, or brain injury, or a diagnosis of an illness or health condition, such as multiple sclerosis, Parkinson’s disease, or cancer can change many aspects of life including the ability to walk, talk, think and care for oneself. It can also affect the ability to have sex and how you and your partner feel about sex. Sex is an important aspect of life and is a very reasonable activity to want to return to following a new diagnosis. This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

A common fear is that having sex can negatively impact your health or well-being. However, there are many other activities that can cause one’s heart rate and breathing to increase. Talk to your physician if you are concerned about whether it is safe for you to engage in sexual activity. In order to keep you and your partner safe and healthy, it is important to practice safe sex including the use of condoms to prevent the spread of sexually transmitted diseases. If you plan on becoming pregnant or are a woman and able to become pregnant, discuss appropriate birth control methods with your physician prior to engaging in sexual activity. Some oral contraceptives may interfere with other medications and you should never change medications without consulting your physician. Returning to sexual activity is an important life activity and having the ability to engage in this meaningful activity is important to recovery. Communication, respect, consultation with your physician, and patience are all key factors when resuming sexual activity and expanding your relationships. Below are a few experiences that people may have following a life changing event or diagnosis of a health condition. Often times, people experience a decreased sex drive. It is not uncommon to experience a change in sex drive. It may take a lot of energy just to get through the day, leaving little energy for anything else, e.g., sex. Sometimes people feel down or depressed which can affect the desire for sex. Decreased sex drive may also be a side effect of medications. However, do not change any of your medications without talking to your doctor. Communication is important. Talk to your partner, choose a quiet, familiar place, take your time, and share your feelings and concerns to ensure that you are physically and emotionally ready to engage in sexual behavior.

Change in Physical Strength and/or Mobility. Some health conditions can cause decreased strength, movement, or feeling (sensation) on one or both sides of the body. Some suggestions include using pillows to support a weak arm or leg. Other positions include sitting in a wheelchair, sitting on a shower seat, or lying on your side. Try touching, caressing, and kissing on the stronger side or increasing the touch on your weaker side. Again, communication is important and describing what you are doing may also help. If you are experiencing muscle spasms that interfere with your sexual activity, talk to your doctor as some medications may be used to control the spasms.

Change in Memory and/or Concentration. Sexual experience can be affected due to problems with memory and concentration. Let your partner help you through short familiar steps. Your ability to understand what is being said and your ability to communicate your wants and needs can also be affected if you have any changes in cognition and language. If you are having difficulty with verbal communication, both partners should focus on facial expressions and gestures to exchange thoughts and feelings. Change in Body Image.

Body image refers to how people see themselves and how attractive they feel they are to others. It is not uncommon for people to experience a change in the way they view themselves and even question whether or not their partner finds them attractive. Sometimes sitting down with a third party, such as a counselor, can assist the process of communicating. Remember, support groups can be helpful to provide you and your partner with other ways to cope. Support groups bring together people facing similar issues who can share experiences. It can be helpful just getting to talk with other people who are in the same situation. However, support groups do not take the place of information your healthcare provider offers. For additional patient education on this topic within the LIFE Center, select the filter for sexuality. References:

Burr W. Sexuality of the disabled often overlooked. CMAJ : Canadian Medical Association Journal. 2011;183(5):E259-E260. doi:10.1503/cmaj.109-3813. Bolton MA, Lobben I, Stern TA. The impact of body image on patient care. Primary Care Companion to The Journal of Clinical Psychiatry. 2010;12(2):PCC.10r00947. doi:10.4088/PCC.10r00947blu. Return to Top

SKIN CARE Skin Care Overview Author: Shirley Ryan AbilityLab – Nursing Practice Council The skin is an important part of the body that works in many ways to maintain health:

• Protects from outside injury or illness; • Prevents germs from entering the body; • Keeps fluids and nutrients inside the body; • Helps to control body temperature in hot and cold weather; • Helps the body form Vitamin D from sun exposure.

Skin is made of several layers of tissue. Some tissues are filled with tiny blood vessels that move oxygen and nutrients to the skin. The skin also has nerves, which send messages from different parts of the body to the brain about touch, pain, and temperature. Other nerves give information about where the body and body parts (arms, legs) are positioned in space.

Keeping Skin Healthy

Healthy skin is intact, well lubricated with natural oils and nourished by a good blood supply. Here are a few tips for keeping the skin healthy:

Hygiene

• Keep skin clean, dry and intact. Skin that is wet from urine, sweat or stool is more likely to break down. • Dry off well after bathing, but do not rub hard with a towel. Rubbing can hurt the skin. • Do not bathe everyday unless it is really needed. Daily baths wash away natural oils that lubricate the skin. • Do not use alcohol for massaging bony areas of the body. Alcohol dries skin. If a back rub helps you to relax, use lotion or oil instead. • Use a moisturizer for excessive skin dryness. Do not moisturize between toes; use baby powder if desired instead.

Nutrition

• Eat a balanced diet including plenty of fruits, vegetables and protein. A dietitian, nurse, or physician can answer questions and help you plan a good diet. • Drink 6 8 glasses of fluid every day. • Remember that pureed or chopped foods have nutritional value. Tube feeding formulas provide all necessary nutrients for healthy skin.

Skin Inspection

• Check skin at least twice a day morning and evening – and more often if you are increasing sitting or turning times. It should be done when you change position. • Look for sores, blisters, rashes, skin color changes, or boggy/mushy skin when they are just starting. • If you need help with skin inspection, clearly explain what someone should be looking for. • Remember to check entire body, especially bony areas. • Use a long handled mirror to help check backs of legs, buttocks and back. • Be alert to areas that have been injured and healed. Scar tissue breaks very easily. • Look for red areas, blisters, openings in the skin or rashes. • Check groin area. Men who wear an external catheter should check penis for sores or other problems.

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Skin Care: Common Problems Author: Shirley Ryan AbilityLab – Nursing Practice Council Rashes - Usually in groin, armpits, under the breast and in other areas where skin touches skin.

Typical Signs Pimples or red blotches

Causes • Bowel or bladder accidents • Sweat or other moisture • Lack of air • Excess absorbent product used Prevention • Keep areas clean and dry. • Allow air to reach rash area. • Follow bladder and bowel program. • Check diapers or pads often. • Do not apply ointment or powder unless ordered by your doctor.

Edema Typical Sign: Swelling of the hands and/or feet Cause: Decreased movement in arms and legs Prevention • Keep arms or legs up. • Wear elastic stockings or support hose. • Do not rub swollen area.

Burns – Can occur anywhere Sign: red areas or blisters on skin Causes: • Cigarettes (from ashes you can't feel) • Hot water or radiators • Heating lamps or heating pads. • Cold packs Prevention: • Test shower or bath water. • Use care in working with hot liquids and cooking utensils. • If a burn occurs, call your doctor and apply cold water for 30 minutes. • Do not set an ashtray on your lap or arm boards. • Do not sit too close to radiators and heating systems. • Do not rest hot liquids on your lap or between your legs. • Do not apply ointment unless ordered by your doctor.

Friction Injury – affect any area of the body Sign: Skin scraped off Cause: Movement of an object against the skin Prevention This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

• Wear clothes when using a sliding board. • Do not let anyone pull your bare skin across a sheet.

Blisters – can happen anywhere Sign: fluid–filled area of skin Causes • Tight leg bag straps or externals • Pressure, rubbing or friction Prevention • Cover the affected area. • Do not break the blister. This causes infection. • Treat the area only if the blister opens.

Frostbite – affects fingers and toes Sign: skin turns pale or white then turns red Causes: Loss of feeling and being out in very cold temperatures Prevention • Wear warm boots and gloves in cold weather. • Do not stay outside for a long time in cold weather. • If exposed to cold, place area in warm water and call your doctor. • Do not put the area into hot or cold water.

Bruises – can happen anywhere Sign: Changes in skin color Cause: Careless transfers or turning Prevention: Pad the areas of your body most likely to be bumped.

Foot Problems Sign: Dry skin Cause: Lack of blood flow or air to the feet Prevention • Keep feet very clean. • Soak feet in warm water then remove dead skin. • Use oil to keep feet soft. • People with diabetes need to learn proper foot care from their doctor or nurse.

Ingrown Toenail – occurs on big toe Signs • Warm, red skin • Pain • Swelling around the toe • Drainage from skin around the toe Cause: Toenails cut too short or round in the corners This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

Prevention • Cut toenails straight across. • If a toenail becomes ingrown, call your doctor. • People with diabetes should generally have a foot doctor trim the toenails properly. • Anyone who notices a change in feeling of the feet should contact their doctor.

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Skin Care: Preventing Pressure Injuries Author: Shirley Ryan AbilityLab – Nursing Practice Council Keeping skin healthy is important for anyone with a disability that involves limited movement and/or sensation. Staying in one position for long periods of time can cause skin damage, known as pressure injuries. Skin tolerance is defined as the period of time a person's skin can remain in one position without any damage. Patients in a rehabilitation setting learn their tolerance for sitting and lying down positions. Tolerance is affected by wheelchair and mattress cushioning, as well as overall health.

Other Factors that Can Cause Pressure Injuries • Wet skin from sweat, urine or stool. • Poor diet low in iron and protein. • Slouching position in bed or in the wheelchair. • Fever. • Bumps or other skin injuries. • Friction to skin caused by being pulled across a surface. This is known as shearing. • Clothing, braces and splints that are too tight • Worn out or incorrect equipment

Increasing Skin Tolerance Skin tolerance can be improved by slowly increasing the amount of time spent sitting or lying in one position, doing regular pressure relief and doing frequent skin checks.

• Do not increase sitting or lying time by more than one half hour every two to three days. If there are no problems while sitting for 30 minutes twice a day, increase the time to 45 minutes. • Perform skin checks at one tolerance for a few days before increasing sitting or lying time again. • With any newly healed pressure sore, start with 30 minute sitting times and slowly increase. • Ask a doctor or nurse whether a pressure injury is healed before continuing to sit or lie on it. • If skin becomes red or wounded, avoid putting any pressure on the area until it is healed. This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

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Avoiding Pressure Injuries • Keep wheelchair foot pedals at the right height. • Use a good cushion on the wheelchair seat. Do not sit on a worn out cushion. • Sit up straight in the wheelchair, since sliding can cause early skin breakdown on sitting areas. • Do not use a rubber air ring or doughnut. These cause a lot of pressure and block the flow of blood to skin inside the ring. • When in the wheelchair, shift weight every 30 minutes. Follow your therapists' instruction. • Do not put items in pockets or on the seat of the wheelchair. • Avoid clothes that are tight or have heavy seams. Also avoid nylon underwear. • Wear shoes that fit well – usually one half size larger than before injury. • Make sure elastic stockings (TED hose) or Ace wraps are put on evenly without wrinkles that cause extra pressure. • Keep skin clean and dry. Skin that remains wet with urine, sweat or stool will have more problems. • Apply lubricating cream often on dry skin. Do not use alcohol. • Use a firm, but not hard, mattress, which supports the body. A foam pad over a regular mattress will spread weight more evenly. • Stick to identified turning tolerance. • Remember that even small shifts in position help relieve skin pressure. • Float heels (or suspend) off pillows while in bed. Return to Top

SPEECH AND HEARING Role of the Speech Language Pathologist Speech Language Pathologists (SLPs), or “speech therapists,” evaluate and treat language, cognitive- communication skills, swallowing disorders, or speech/voice impairments. This document explains specific treatment areas that may be focused on during speech and language therapy.

A language difficulty, known as aphasia, is an impairment in one or all areas of language, including: • Listening comprehension/understanding • Reading comprehension/understanding • Spoken language • Written language

Cognitive-communication difficulties, or difficulties with thinking skills, may include problems with:

• Attention • Memory • Problem solving This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

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• Orientation to person, place, time/date • Social communication skills

• Executive functions o Initiation o Planning o Organization o Reasoning o Time management o Self-monitoring

A swallowing problem, known as dysphagia, is difficulty moving food and liquids efficiently and safely from the mouth to the stomach. This may result in food or liquid remaining in the mouth or throat after the swallow. It can also cause food or liquid to go into the lungs (known as aspiration). Dysphagia may be caused by: • Weakness • Incoordination • Decreased sensation • Fatigue

Speech and voice production involves the physical movements of the mouth, tongue, and vocal cords that are necessary for talking. An impairment in clear speech, known as dysarthria, may be caused by: • Weakness • Paralysis • Incoordination

Changes in voice can also affect how understandable a person is when they are talking. These changes can include problems with:

• Volume • Voice quality (e.g. hoarseness) • Pitch • Nasality • Voice endurance • Breath support

Difficulty sequencing speech sounds is known as apraxia of speech. This results in difficulties producing and forming speech sounds necessary to communicate.

Your speech therapist may work with you on only one or several of these areas depending on what your needs are. Please contact your Speech Language Pathologist with any questions. This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

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Reference: http://www.asha.org/careers Return to Top

SUPPORT AND WELLNESS Health and Wellness Author: Robert J. Hartke , PhD, ABPP; Catherine Wilson , PsyD; Richard R. Trezona Jr., PhD Health promotion and wellness are general terms that go beyond being free of illness to feeling good and having good quality of life. Wellness means feeling that various parts of your life are in balance. It is also more of a goal to aspire to be “the best you can be.”

What promotes good health? Wellness covers many important areas of life. Beyond physically feeling good, it also includes emotional, social and spiritual areas; and health habits, such as exercise and diet. For many people, a strong belief system helps in understanding their purpose in the world. These areas emphasize the connection between the mind and the body.

How is stress and stress management related to wellness? Everyone gets stressed. Stress can wear your body down both mentally and physically. A healthy body can cope with stress better than an unhealthy one. Stress management means coping in different ways to keep healthy. Wellness includes many of the same skills that are part of stress management. Staying physically active is an excellent stress reducer as is eating a healthy diet. Other ways to manage stress include humor, keeping a balanced life, getting enough sleep, and meditation.

Is it possible to live a healthy life even with a chronic illness or disability? Most definitely, an individual can have health and wellness, even with a chronic illness or disability. Wellness is different for each person considering their illnesses and limitations, age and values. In fact, working on wellness can prevent complications from chronic illness or disability.

Why is it important to think about wellness even after acquiring an illness or illness or disability? When someone has an illness or disability, it is easy to feel overwhelmed and helpless. Staying healthy involves making lifestyle choices and using recommended medical treatments. Tobacco use, poor eating habits, and a lack of physical activity are some of the key risk factors for complications to chronic illness or disability.

What role does spirituality play in maintaining wellness? This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

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Spirituality usually refers to something that gives people meaning and purpose in life, and a sense of belonging to something that is greater than themselves. Being religious may involve a particular set of beliefs, like being Catholic, Protestant, Jewish, or Islamic. Research has linked spirituality and religious involvement with long term health, including lower rates of heart disease, lower blood pressure, and decreased anxiety and depression. Spirituality can give meaning to life events and help answer questions about why a disability may have happened. Being part of a religious group can also provide additional emotional support.

How is substance abuse related to wellness? Substance abuse, including alcohol, can affect long term health, causing such problems as heart, liver, and lung disease. These problems can be especially important for people with disabilities and chronic illnesses. Substance abuse can make current health problems more serious, or put a person at risk for further injury. Even substances which are usually good for us, such as medications, can be over used and lead to health problems. Sometimes people abuse substances as a way to cope with stress or cover up feelings of depression or anxiety. In these instances, it is important to recognize the signs of emotional distress and substance abuse and get help.

How important is it to follow through on doctor visits and recommendations? It is especially important for persons with disabilities or chronic medical conditions to stay in touch with doctors and follow recommendations. Medical problems often connected with disability, such as high blood pressure or diabetes, need to be looked after on a regular basis. Risk of developing complications, such as skin breakdown that can come with reduced activity, should also be watched closely. It is important to develop good, working relationships with doctors and therapists to manage such health conditions.

What role does exercise and diet play in maintaining wellness? Exercise and good nutrition are important for everyone, and can be more critical for persons with disability who may lack opportunity for or tend toward inactivity. Exercise has a number of benefits, including better heart function, lower cholesterol and blood pressure, and improved feelings of well being. Exercise can also increase strength and flexibility, and make daily activities easier. Exercise can be done in groups and provides an opportunity to get together with others. Before beginning an exercise program, it is best to inform your doctor. Proper nutrition, including a balanced diet, is another part of staying well. Alcoholic beverages should be used in moderation.

How are alternative therapies related to wellness? Alternative and complementary therapies are types of treatment that are used with conventional medicine and fit well with the concept of wellness. Alternative therapies follow the principle that once the body is cleaned, fed, and balanced, it has the ability to heal and recover from disease and stay healthy. The number of complementary and alternative therapies now available, and the different types of therapists who practice them, can be overwhelming. There is no agreement in the medical community as to when to consider these treatments. It is important to tell all of your therapists when deciding to use an alternative therapy. Some examples of these therapies are: acupuncture, Chinese medicine, reiki, massage therapy, homeopathy, chiropractic, nutritional supplements, yoga and reflexology. This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

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How can I learn more about different aspects of wellness? Start with health care authorities such as patient education centers in hospitals. Here at the Rehabilitation Institute of Chicago, the LIFE Center is a great source of information on wellness. You can visit in person or through the internet. There are also a number of popular books on health and wellness available in libraries and book stores. National organizations focused on different types of diseases or disabling conditions are also good sources of information. A few resources are listed below as examples.

References: Balch, P. and Balch, J. (2000). Prescription for Nutritional Healing, 3rd edition; New York: Avery Carlson, J. (2002). Complementary Therapies and Wellness. Prentice Hall Return to Top

Health and Wellness on a Continuum – Associated Conditions Author: Shirley Ryan AbilityLab – Henry B. Betts LIFE Center

Health and wellness are not the absence of diseases, but they are concepts that influence one’s quality of life; they comprise a dynamic state that everyone addresses throughout their lifetime. This state changes depending on other factors that enter into your life. Health and wellness include many areas of your life such as physical, emotional, spiritual, social, and cognitive (thinking) areas. When it comes to persons with disabilities, healthy behaviors and a desire toward positive health across the life span is the same than it is for persons who do not live with a disability.

Oftentimes, when a person faces a new health condition, and/or a life-changing event he/she experience a host of associated conditions such as alcohol abuse, stress, anxiety, depression, and post-traumatic stress disorder (PTSD) to name a few. It is important to know when to seek additional support services, such as mental health counseling, support groups, and/or medication. Below are links to several pamphlets from the National Institutes of Health that you can download free. For more information, please check these online sources below to learn more about the topic and to download additional information. All information is available in Spanish and English.

Five Things You Should Know About Stress https://www.nimh.nih.gov/health/publications/stress/5thingsshldknowaboutstress-508- 03132017_142898.pdf

Generalized Anxiety

105 https://www.nimh.nih.gov/health/publications/generalized-anxiety-disorder-gad/generalized- anxiety-disorder_124169.pdf

Depression: What You Need to Know https://www.nimh.nih.gov/health/publications/depression-what-you-need-to-know/depression- what-you-need-to-know-pdf_151827.pdf

Post-Traumatic Stress Disorder https://www.nimh.nih.gov/health/publications/post-traumatic-stress-disorder-ptsd/ptsd-508- 05172017_38054.pdf

Alcohol: Understanding Alcohol’s Impact on Your health https://pubs.niaaa.nih.gov/publications/Hangovers/beyondHangovers.pdf

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Being Your Own Advocate - Living with a Disability or Chronic Illness Author: Paula Thomas, RN Life is a partnership with others. This is true for everyone, whether living with a disability or not. Learning to be your own advocate is an important step in coping with a chronic illness or disability – empowering you to get your needs met. Feeling a sense of empowerment happens in many ways. Here are some tips to begin:

•Keep a Personal Health Record – a written health history with dates, physician names and phone numbers, diagnoses and treatments provided. •Learn your rights under the Americans with Disabilities Act (ADA). •Understand how your health plan works whether HMO, PPO, POS, etc. including coverage gaps and potential out of pocket costs. Make sure you have a copy of your benefit handbook or know how to access online. •Learn how long private insurance benefits continue if you do not return to work. •Consider naming a Health Care Power of Attorney. •Learn to work with your health care providers as a partner. •Be knowledgeable about your disability and physical care needs. •Don't be intimidated – you know your body. If you feel that there is a change in your health that needs medical attention, contact your health care provider. If you don't feel issues are being addressed, discuss This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

106 this with your provider.

The health care environment is fast paced and appointments are often short. Here are suggestions for ways to maximize time with your provider: •State your priorities for the visit and what information you want to discuss. •Develop a question list and forward to the provider ahead of time if possible. •Take notes or have another person take notes during discussions. •Be brief and to the point in your communications with providers. •Present a concise health history and only include relevant information that pertains to your disability or reason for seeking medical treatment. •Summarize and repeat provider information to confirm understanding. •Follow up by obtaining test results. •Get a second opinion if necessary. •Call before your office visit to find out if the provider is running on time. •Call to determine building accessibility before appointments. Return to Top

Caregiver Support Groups - Chicago City of Chicago - Family & Support Services The Chicago Department of Family and Support Services offers a number of local Caregiver Support Groups with free respite service. Call 312-744-4016 for more information. Location Information City of Chicago Department of Family & Support Services 312.743.0300 or 312-744-4016 http://www.cityofchicago.org/city/en/depts/fss.html Return to Top

Illinois Network of Centers for Independent Living (INCIL) This statewide organization is made up of 23 individual Centers for Independent Living (CIL) in Illinois. Through these centers people with disabilities are empowered with knowledge and skills for self sufficiency and full participation in the community.

INCIL provides assistance and information on:

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– Independent living skills training – Accessible housing – Transportation – Employment opportunities – Personal assistants – Interpreters for persons who are hearing impaired – Readers for persons who are visually impaired – Peer counseling – Advocacy for individuals and communities – Reintegration into the community

Contact Information Illinois Network of Centers for Independent Living 800.587.1227 http://www.incil.org Return to Top

Independent Living Centers Directory - National listing Centers for Independent Living (CIL) are nonresidential disability advocacy agencies that support people with disabilities to live in the least restrictive community of their choice. This civil right, guaranteed through the Olmstead Decision, states that people with disabilities should receive public benefits and services in the most integrated setting appropriate to their needs.

CIL agencies provide a variety of community–based services. From the link below, click on a state to locate an independent living center close to your home. For more information, use this weblink: http://www.virtualcil.net/cils/ Return to Top

Shirley Ryan AbilityLab Peer Visitor Program

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Peer visitors are available to current inpatients and families at the Shirley Ryan AbilityLab during a hospital stay. Talk it over with someone who’s “Been There” A Peer Visitor is someone who can talk with you about:

•Real issues of disability •Going through the rehab process •Living independently •Finding disability resources

The LIFE Center and Access Living (a non–residential independent living organization for people with disabilities) have developed a team of trained peer visitors who, like you, live with a disability. Peer visitors are available to current inpatients and families at the Shirley Ryan AbilityLab during a hospital stay.

To arrange a visit, contact: Cris Mix, OTR/L, Education Program Manager, Henry B. Betts LIFE Center 312.238.5433 email: [email protected]

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Spiritual Care at the Shirley Ryan AbilityLab Author: Rev. Beth Reece

Many patients, as well as their family and friends, value spiritual support during acute inpatient rehabilitation. Chaplains offer emotional, spiritual, religious, pastoral, ethical, and/or existential care to patients, family and friends coping with illness and disability. The Spiritual Care Department at the Shirley Ryan Ability Lab adheres to the Common Code of Ethics, including respect for confidentiality and cultural and religious diversity.

Spiritual care staff chaplains are available seven days a week to provide personal visitation for spiritual and emotional support and encouragement including faith counseling, family support and intervention. Visits may also include a spiritual assessment to develop and implement a plan of care to promote patient and family spiritual well-being. Chaplains also offer blessings, benedictions, and other special religious rites as needed and requested.

The chapel/meditation room is located on the southwest corner of the tenth floor Sky Lobby and is open 24 hours a day. Supportive materials for expressing one’s faith are available such as daily prayer This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

109 schedules, sacred books, and prayer rugs for the Muslim community, the Torah, the Christian Bible, inspirational readings, and interdenominational prayers. Chaplains provide challah and juice and Sabbath Candles for Jewish patients, if requested. Ministers of Care from Holy Name Cathedral offer communion to Catholic patients several times a week. Catholic Mass is held on Tuesday evening at 6:30-7:00 PM in the chapel. An interdenominational Christian service is held in the chapel on Sunday morning at 10:15- 10:45 AM.

Spiritual support is also offered through complementary therapies such as aromatherapy, inhaling the scent of pure, natural oils approved for hospital use, that may affect mood, lessen stress, or relieve nausea. Other therapies offered are: hand massage, Healing Touch, (an "energy therapy" that uses gentle hand techniques to restore balance, reduce stress, and encourage well-being) and individual and group meditation/mindfulness or guided imagery sessions. A progressive relaxation meditation is offered in the chapel Monday through Friday at 12:30-1:00 PM. Open to the entire community, as well as patients, families, and staff, this half hour concentrates on deep breathing, guided relaxation from head to toe, with ocean waves in the background.

Because accident and illness can cause spiritual distress, loss of identity, and emotional trauma, our department wants to support patients and families as they grieve, cope, find new hope, and discover new ability for rebuilding their lives.

The Spiritual Care Department can be reached at 312 238-1200 or by asking a staff member or nurse to page the department.

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Straight Talk about Disability Author: Judith Panko-Reis A disability is a physical or mental impairment that restricts a person's daily activity. We all experience disability at some point in our lives through problems such as depression, insomnia or even a broken leg. For people with permanent or long–term disabilities, however, it is a more significant factor. While people with disabilities are not defined by impairment, it does play a role in shaping their lifestyles.

Most people with disabilities are limited in only some ways, not all. They can, and do, participate in all aspects of life, including work, play, romance and parenting.

Understanding Disability Disability occurs in people of all backgrounds, gender and age. In the United States, people with disabilities comprise the largest minority group: about 20 percent. Disabilities can occur from birth or as a

110 result of disease or injury.

When meeting persons with disabilities, some people are uncomfortable and feel sorry for them, assuming that they have a poor quality of life. This common stereotype can discourage social interactions and the development of true relationships. Reasons for this unease about disability include psychological and cultural influences, as well as emotional reactions (fear, disgust and pity). Fear of the unknown is also common. This can lead to assumptions, stereotyping and prejudice. Even the most well–intentioned person may feel awkward and avoid people with disabilities out of self–consciousness or fear of failure. For example, an individual may think, “Since I don't know what to say or how to act, I'll just look the other way and avoid saying hello.”

Those with disabilities do not want pity nor do they want to be unduly glorified for “courageously” coping with everyday life. People with disabilities experience a positive quality of life to the same degree as other people. People with disabilities want to be treated with respect and as equals with their non– disabled peers.

When meeting people with disabilities, the best thing is to be open – willing to learn and make no assumptions. Do not assume that all people who use wheelchairs cannot walk, for instance, or that someone with a cane needs help at a street crossing. People with disabilities are as varied as social situations.

People with disabilities have the full range of personality traits. Disability is not a measure of character. If you have questions about a disability, ask – within polite boundaries and if your question is relevant to the conversation. People with disabilities, like everyone, would rather dwell on their strengths than weaknesses.

Building a User–Friendly World In addition to other people's discomfort and fear, people with disabilities cope with other barriers that can complicate everyday living. Grocery stores, parking facilities and public transportation systems, for example, are often designed in ways that make routine errands difficult. These guidelines can help create a friendlier environment:

If you think someone needs help, ask how to be of assistance, and then follow the person's instructions. It is always okay to ask, but not okay to assume. Once you ask, do not move until your offer is accepted.

When meeting someone with a disability, be sure the location is accessible (including parking lots and bathrooms). For people with mobility limitations, ask if they require any accommodations, such as elevators or ramps. If you suspect a problem, change the site or let the person know ahead of time. Always speak to the person you are addressing, not to a companion or interpreter. Do not worry about using expressions that could be interpreted as disability–related puns, such as “Got to run” or “See what I mean?” These are part of our common language and are not offensive.

People with Wheelchairs This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

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Wheelchairs are a source of freedom and mobility for people who cannot walk or have difficulty with movement or endurance. Wheelchairs help people get where they need to go. People are not “wheelchair– bound” or “confined to a wheelchair.”

• A wheelchair is part of an individual's personal space. Respect that space. It is not polite to touch or lean on a wheelchair without the user's permission.

• Always ask before you move a person in a wheelchair – out of courtesy, but also to prevent disturbing the person's balance.

• If a person transfers from a wheelchair to a car, chair, bathtub, toilet, etc., be sure not to move the chair beyond easy reach.

• Always make sure that a chair is locked before helping a person transfer.

• When conversing at length with a person in a wheelchair, try to sit or place yourself at eye–level.

People with Speech and Language Impairments Speech and language disabilities can range from slight mispronunciations such as a lisp to total loss of speech and language. Be patient when communicating with a person with a speech and language disorder. Do not finish sentences, although rephrasing or repeating words to verify understanding is acceptable.

• Treat the person as an adult – do not “talk down.” The issue is one of communication, not intelligence.

• A quiet environment is optimal so keep background noise to a minimum.

• Familiarize yourself with, and encourage the use of any alternate or augmentative communication system that the person may have such as talking devices, alphabet boards or high–tech computer applications.

• Use facial expressions, gestures, writing and drawing to reinforce verbal messages.

• Speak somewhat more slowly, using short simple sentences to promote understanding. Do not yell.

• If you have difficulty understanding, ask for multiple repeats. Never pretend to understand if you do not.

People with Visual Impairments There are many degrees of visual impairment. White canes with red tips are used both by people who have low vision and those who are totally blind.

• Always announce yourself and introduce anyone with you. Before trying to shake hands, say something such as “I'd like to shake your hand.”

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• Inform the person who is visually impaired when you are leaving.

• If you think someone needs help, ask first by saying something such as “Would you like assistance?”

• If requested, offer your arm as a guide (do not take the person's arm) and inform the person of obstacles such as curbs or steps.

• When offering a seat, place the person's hand on the back or arm of the chair.

• When dining, help orient the person to the table setting.

• Not all people with vision impairments read Braille. Some read large print, use tape recorders or other special equipment.

• Do not pet or speak to a guide dog. Dogs are at work, even when sleeping.

People who are Deaf or Hard–of–Hearing Hearing impairments are sometimes referred to as “hidden disabilities” because of a lack of obvious signs. There are different types and degrees of hearing loss. For some people, hearing loss may be present from birth; for others, it may be acquired gradually over time.

• Hearing loss is not related to intelligence.

• Hearing aids may be only partially effective. Even when amplified, sounds may seem distorted to someone with hearing loss.

• Turn down, or off, background noise or music.

• Engage the person's attention before speaking – touch lightly, wave, or use another physical sign.

• Speak clearly, from a close proximity. Yelling or exaggerating will not increase understanding.

• Face the person and speak directly. Do not speak to an interpreter, if one is present. Avoid covering your mouth, chewing, smiling or smoking when speaking.

• Make sure that difficult information, such as names, addresses and phone numbers, are understood by asking the person to repeat the information. It is also acceptable to write things down.

• People who have been deaf or hearing impaired from birth or an early age may be difficult to understand and may need to communicate by sign language or other gestures. American Sign Language (ASL) is the most common, but there are many different “Signed English” systems in use, especially by children.

People with Intellectual or Developmental Disabilities This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

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People with developmental disabilities (historically referred to as mental retardation) are often confused with having a mental illness, which accounts for most of the misunderstanding that surrounds this disability. Very few of all people with developmental disabilities have profound intellectual impairment. About 85 percent can read, write, drive, think and lead productive, independent lives. People with developmental disabilities are responsible, industrious and reliable – or not – to the same degree as everyone else.

Disability–Sensitive Language Most people with disabilities prefer the term “person with a disability,” which recognizes an individual's innate personhood before the disability. This is called “people first” language. Avoid the terms below when referring to people with disabilities. They are inaccurate, offensive and insulting and they perpetuate the stereotype of “otherness.”

Avoid using these terms: afflicted with or by blind as a bat deaf and dumb, deaf mute defect / defective deformed disabled cripple, crip, crippled, crippling group home handicap/handicapped homebound invalid normal (as the opposite of having a disability) pitiful poor, unfortunate stricken suffered victim wheelchair bound, confined to a wheelchair

Replace these with respectful terms such as: survived sustained living with person with a disability non–disabled or able–bodied uses a wheelchair, uses an assistive device person with a physical disability person who is deaf or hard of hearing has difficulty speaking, has a speech disability This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

114 person who is blind or has low vision person with an intellectual, cognitive, or developmental disability

The following glossary may help clear up some other language issues:

ADA: Americans with Disabilities Act, signed in 1990, is the first comprehensive civil rights legislation to protect people with disabilities.

Able–bodied: What people with disabilities call the non–disabled; a neutral term

Blind: Having no vision. Low vision: Having partial sight.

Cerebral palsy: Neurological condition occurring before, during or right after birth resulting in difficulties of coordination, movement and/or speech.

Communicative disorder: Term for speech, language and/or hearing impairments.

Deaf: Lacking the ability to hear.

Independent Living: A movement among people with disabilities to enhance self esteem, self determination and socio–economic resources available to choose and maintain individual, independent lifestyles.

Learning disability: A disorder in one or more of the basic processes involved in understanding or using spoken or written language that may affect a person's ability to think, listen, read, write, spell or do math.

Paralysis: Paraplegia is paralysis of the lower half of the body including the partial or total loss of function of both legs. Quadriplegia is paralysis involving partial or total loss of function in both arms and legs. Hemiplegia is full or partial paralysis of one side of the body.

Rehabilitation: Program of medical and clinical treatment designed to maximize residual physical, perceptual and cognitive abilities following a disability. Return to Top

Tips When Visiting Someone with a Disability Author: Lisa Rosen, MS Have you ever visited a friend in the hospital or at home after they went through a life–changing event and not known what to say? Or, you get through the initial greetings and then silence. What to talk about next? You surely don't want to be constantly focusing on the disability or talking incessantly about This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

115 yourself….so what do you do or say? Consider these tips on your next visit.

Be Yourself Small talk often opens conversations. Don't feel compelled to discuss the person's current situation. Feel at ease and discuss mutual interests, current events or what's happening in your life. It's okay to talk about the disability if it comes up, but don't pry. Share information, ask questions but be careful not to monopolize the conversation. Above all, take the time to really listen to what they are saying and be yourself. It is okay to use common expressions like “I'll see you later” (when speaking to an individual with visual impairments), or “I have got to run” (when speaking to an individual in a wheelchair).

Have Fun Bring an activity with you. Sometimes we learn the most about someone while doing something together. It eases the pressure of coming up with conversation while providing a non–threatening atmosphere. The focus becomes the activity and not the person and their disability, and that is refreshing. It could be a board game, craft activity, movie, or even food. If the individual has a computer, you could surf the net for helpful resources or community services. Bring the newspaper and talk about current events. Give her a manicure or fix her hair. Bring a friend or children to visit. Be creative.

Include Children Children will look to the adults on how to behave around someone with a disability. Remember, the more comfortable you are, the more comfortable the child will be. Take time with your child to explain that if someone uses a wheelchair, walks with crutches, or communicates by using sign language, it only means that their differences are apparent on the outside. They may be more similar than different on the inside. Take the time to find out. If your child wants to ask someone with a disability a question, don't stop him/her, let them. If the person doesn't want to answer, then they'll let you know. Chances are that they'll welcome the opportunity to talk with you.

Ask First If you see that the individual is having trouble with a task, ask first if they need some assistance rather than rushing over to “fix” the situation. It is much more encouraging for the individual to explore what their body is capable of. It may take some time and patience, but it is critical for their independence and quality of life.

Expand Your Knowledge Learn the facts about a person's disability. Knowing what to expect can help prepare you for future challenges. Offer unconditional support. Encourage independence; help them feel good about themselves. Help look for new ways for the individual to achieve his/her goals. You can be a great resource by finding helpful people, programs and organizations.

Be Careful when Offering Advice Don't pretend like you know how they feel. You may feel for them, but you haven't necessarily walked in their shoes. It can be very irritating for the individual to listen to someone who hasn't been in his or her situation yet knows “what's best.” Don't compare them to anyone else. Remember everyone is an This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

116 individual and copes in their own way. Recognize their uniqueness by validating where they are now, in the present. It's possible that you know another person in a similar situation, and its okay to let them know that there are others out there. However, stress that each person is unique. If you want to discuss how this other person is doing and they are at a completely different point in their life, use caution in the way in which you communicate it. For instance, it's not a good idea to say, “Mary has a similar disability to you and she's always happy, has a great attitude and even managed to climb Mt. Everest.”

Try to offer unconditional support rather than telling the person what to do and how to do it . Encourage their discovery of a new lifestyle suited for their individual needs. This will enable a greater sense of self– esteem, self–worth and independence.

Try not to minimize their situation by offering catch all phrases like “It could always be worse. ” They may be thinking this is as bad as it gets, their life has just been turned upside down.

Sometimes the best advice is no advice at all. Just your support, presence and unconditional love can be the best medicine.

Relax The person is still the same person inside. It may take some time for everyone to adjust, but don't give up! Your time, energy, and support are the best gift you can give. Return to Top

TRANSPORTATION Association for Driver Rehabilitation Specialists Primary professional organization for persons working in the field of driver education and driver training and transportation equipment modifications for persons with disabilities. Information includes fact sheets about driving tips for persons with specific disabilities (amputation, spinal cord injury, brain injury, Alzheimer's, cerebral palsy, spina bifida, multiple sclerosis, and arthritis, as well as about aging and driving) . Contact Information http://www.driver-ed.org, 866-672-9466 Return to Top

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Disability Parking Placard and License Plates Illinois, Indiana, Iowa, Michigan and Wisconsin People with a disability who drive or are driven in a private car may apply for a card or license plate that allows parking in specially designated accessible spaces.

Each state has an application process in which the appropriate form must be signed and completed by both a physician and the applicant. Forms are then typically submitted to the Secretary of State office.

Advocacy Tip for Accessible Parking

All facilities that offer parking for employees or visitors must provide adequate accessible parking for people with disabilities. The accessible parking space and nearby striped access space must be clear of obstructions at all times. All accessible spaces should be situated on level pavement.

Complaints about inaccessibility or improperly marked spaces should be addressed to the Disability Rights Bureau of the Attorney General's Office. ILLINOIS: Chicago: 312–814–5684 TTY: 800–964–3013 Springfield: 217–524–2660 800-252-6950 http://www.cyberdriveillinois.com/ INDIANA: 888-692-6841 http://www.in.gov/bmv/ IOWA: 515-237-3110 https://iowadot.gov/mvd/vehicleregistration/persons-with-disabilities MICHIGAN: 888-767-6424 https://www.michigan.gov/sos WISCONSIN: 608-266-3041 http://wisconsindot.gov/Pages/dmv/vehicles/dsbld-prkg/default.aspx This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

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OTHER STATES: Check http://www.dmv.org/ for other Department of Motor Vehicles offices nationwide. Return to Top

Driving following an Injury or Disability Author: Shirley Ryan AbilityLab – Henry B. Betts LIFE Center For many people, being able to drive provides a sense of independence and freedom. It is something routinely done without realizing it is a very complex skill. The ability to drive safely can be greatly affected by changes in health.

The information below will: • Help you and your family understand how a disability or injury can affect driving; and • Describe the role of driver rehabilitation programs.

Any change in health status can change the ability to use or move different body parts. Depending on the situation, thinking skills such as memory, concentration, making safe judgments and being able to solve problems may also be affected. Due to these impairments, a driver may have difficulty: • Using the gas and brake pedals. • Turning the steering wheel. • Transferring in/out of a vehicle. • Using keys, turning the ignition or operating controls such as turn signals. • Turning the head, neck or body to view blind spots. • Reacting to traffic situations quickly and correctly.

Many individuals with disabilities are able to drive independently and safely. Often, one of the goals of therapy following an injury is being able to drive. During the rehabilitation process, it is important to discuss goals for driving with the physician and health care team. Driving is best considered at the point in therapy when strength and independence in many other activities have been regained.

Driver Rehabilitation Programs

Driver rehabilitation programs are designed to ensure that drivers can be on the roads safely. Depending on the type and severity of an injury or disability, some people are referred to these programs by their rehabilitation team.

Each program provides a comprehensive driving assessment including both a clinical evaluation and behind the wheel (BTW) component. Four types of professionals are usually involved. This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

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A physician makes the referral and gives medical approval for driving. This referral does not mean that the individual is able to drive safely; it means that the medical condition is stable and an evaluation to determine the potential for driving is indicated. The physician is responsible, and in some states liable, for the patient's care. Every state has different rules for physicians to follow.

An occupational therapist (OT) performs the clinical evaluation (about one hour) which includes medical history, health condition, vision, thinking skills, overall strength, movement and coordination. There may also be questions about driving history and driving knowledge.

A driving instructor performs the actual driving evaluation and provides training as needed. It usually takes about two hours. The behind the wheel (BTW) evaluation consists of driving in a vehicle in different types of traffic and driving situations.

A rehabilitation engineer may develop adaptive equipment such as special seating, vehicle or wheelchair modifications.

Participation in any program also requires a valid driver's license (or permit) and payment. For individuals under age 18, the driving program works with the high school to help with obtaining an instruction permit.

After the evaluation, results and recommendations are given to you and your doctor. This allows you both to decide whether driving is a feasible option. If you require the use of any adaptive equipment for driving, additional training sessions are scheduled.

Cost for driver rehabilitation programs varies. Some insurance providers will cover the clinical evaluation but not BTW, additional training or equipment costs. Ask your health care team, insurance representative, or call the selected driver rehabilitation program about funding.

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Driver Rehabilitation Programs near Chicago Being able to drive is a sign of independence and freedom. A disability can affect driving, but many individuals do return to safe and independent driving. In some cases, this may require evaluation by a Driver Rehabilitation Program.

Driver Rehabilitation Programs are staffed by occupational therapists, rehabilitation engineers, and certified driving instructors. This team of professionals provides a comprehensive clinical and behind the wheel (BTW) evaluation. The goal is to determine an individual's potential for driving and recommend This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content. © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

120 specific equipment for their vehicle if necessary. Most insurance providers cover the cost of the clinical, but not the BTW, evaluation. When calling for information, ask about alternative funding sources.

Alexian Rehabilitation Hospital http://www.alexianbrothershealth.org/arh/services/driver-evaluation

Centegra Driver Evaluation and Rehabilitation Program https://centegra.org/service/rehabilitation-services/driver-rehabilitation-service/

Chicago Lighthouse Driving Rehabilitation Program http://chicagolighthouse.org/program/driving-rehabilitation-program/

Loyola University Medical Center https://www.loyolamedicine.org/rehabilitative-services

Marianjoy Rehabilitation Hospital

This location also offers a Teen Driving Program that coordinates services for teens with special needs in nearby high schools; a highly specialized low vision program; and a program that offers an adapted van for persons who drive from their wheelchairs. http://www.marianjoy.org/MARTI/DriversInfoletterupdated2016.pdf#search=

Northshore University Health System http://www.northshore.org/

Providence of Palos Heights Driver Rehab http://www.providencelifeservices.com/communities/providencepalosheights/driver-rehab/

Rush University Medical Center Driving Rehab Program https://www.rush.edu/services-conditions/occupational-therapy-ot/driving-rehabilitation- programs-and-services

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