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Home , Physical therapy

Adults w/IDD: Confronting Challenges 04/13/2018 Across the Care Continuum

DISCLOSURES

• Both speakers receive payment for Adults With Intellectual & employment. Developmental : Confronting Challenges Across The Continuum • Both speakers are eligible for session reimbursement/ honorarium. Jeanne O’Neil McCoy, PT, DPT, MS, NCS Marianjoy , part of Northwestern , Wheaton, IL Marilyn Holt, PT, MHS, GCS, CEEAA LTC Support, Galesburg, IL 2018 CONFERENCE & EXPO Friday, April 13, 2018

Objectives

(ipta.org)

(Pediatricapta.org)

(clearreview.com)

(acutept.org) (https://herdfoundationnagpur.wordpress.com/2015 /01/12/international-thank-you-day-january-11/)

Property of J McCoy/M Holt; not to be copied w/o permission 1 Adults w/IDD: Confronting Challenges 04/13/2018 Across the Health Care Continuum

Objectives (1 of 4) Objectives (2 of 4)

• Discuss concepts related to normal & • Promote early abnormal aging, mobilization, & consider reasons for select & implement hospitalization, & safe patient handling employ strategies to for adults w/IDD. prevent or minimize complications for adults w/IDD. (https://mobile.va.gov/app/safe- patient-handling)

Objectives (3 of 4) Objectives (4 of 4)

• Foster continuity of care utilizing effective communication & care coordination that allows for the • Identify resources to development of a plan of care enhance the health specific to the unique needs of care experience of each patient across the continuum persons with of care, encompassing needed services & assuring that the developmental patient receives the optimal care in disabilities & their the right place & at the right time families/caregivers. to facilitate return to prior activity & (pinterest.com) participation levels, thus reducing (https://www.eiseverywhere.com morbidity, rehospitalization, & /file_uploads/) health care costs.

Developmental (DD) DD Examples

"Developmental disabilities are a • ADHD group of conditions due to an • Autism Spectrum Disorder impairment in physical, learning, • language, or behavior areas. These • Hearing Loss conditions begin during the developmental period, may impact • day-to-day functioning, & usually last • throughout a person’s lifetime." • Vision Impairment (ahcancal.org) (https://www.cdc.gov/ncbddd/developmental • Other Developmental disabilities/facts.html) Delays (Supportourribbons.com) (cdc.gov)

Property of J McCoy/M Holt; not to be copied w/o permission 2 Adults w/IDD: Confronting Challenges 04/13/2018 Across the Health Care Continuum

Intellectual Disability (ID) Health Disparities for People w/IDD (Iacono et al, 2014) (Moran et al, 2013, Perkins et al, 2010)

• Lack of access to high quality • Failure to include adults w/ • Onset before age 18 medical care IDD in public health & prevention activities • Lifelong limitations in IQ • Inadequate preparation of (<=70) & adaptive health care providers • Higher rates of morbidity & functioning mortality • Social determinants of health: • 1-3% of world's population age, gender, poverty • Unrecognized or poorly managed health conditions

(Brittanymteacherresource.blogspot)

Normal Aging Changes Theories of Aging (No One Universal Theory!) (pinterest.com) Stochastic Non-Stochastic Psychological

Aging caused by external forces Aging internally regulated by a Attempt to explain behavior, roles, & acting on body cells; no way to slow biological time clock; nothing can relationships in the aging process the process change it

Free Radical Theory Programmed Aging Theory Disengagement Theory Cells are damaged by free radicals A biological clock controls behavior Older adults & society mutually withdraw which leads to aging & life span from each other; aging person becomes more introspective & self-focused.

Somatic Mutation Theory Pacemaker Theory Activity Theory Chromosomes damaged by Neurochromosomes (brain) Continuing the social activities of middle exposure to toxins or radiation regulated development throughout age or those activities must be replaced the lifespan w/others for successful aging

Wear & Tear Theory Immunological Theory Continuity Theory (bing.com) Damage from everyday wear Immune system changes Personality & behavior develop over a eventually exceed the body’s ability responsible for aging effects lifetime & are key to how a person to repair itself adjusts to aging

Age-Related Changes (hopkinsmedicine.org)

• Vision • Brain • Hearing • • Taste • Kidneys • Touch & Smell • • Arteries • Metabolism • Bladder • Muscles • Body Fat • Skin • Bones • Sexual Health

(http://agingcarefl.org/what-is-normal-aging/)

Property of J McCoy/M Holt; not to be copied w/o permission 3 Adults w/IDD: Confronting Challenges 04/13/2018 Across the Health Care Continuum

Obesity & CVD (McLeod et al, 2016) (Long & Kavarian, 2008)

(i1.wp.com)

• Obesity: 36.4% w/ID vs. 20.6 w/o ID • 60-70% obesity rates adults w/ID or DS • 2.5-4x greater obesity rates than general population • > HTN, diabetes, CVD, , & stress • Lack of physical activity, poor diets, environmental factors >obesity • CVD leading cause of death in ID (except )

(https://www.resourcesforintegratedcare. Aging with a com/idd/gcc/webinars/aging_idd/webinar1) • Common to live to 50's, 60's, 70's • "Accelerated Aging" • Sensory Loss (eyes & ears) • Hypothyroidism • Obstructive Sleep Apnea • / • Atlantoaxial Instability & Cervical Spine Disorders (e.g. ) • Celiac Disease • Increased Alzheimer's dz risk • ~50% by age 60 (Ndss.org) • NOT inevitable

Aging with Cerebral Palsy (Peterson et al, 2012)

• Premature Aging (between 20-40 yrs) • Increased • Difficulty or muscle stiffness • Increased falls risk • Dental impairments • Long-term of medications &/or • 25% of child walkers lose ability when older • OA/DJD/Overuse Syndromes/Nerve Entrapments (ucp.org) • Dysphagia • "Post-impairment Syndrome"

(from CerebralPalsyGuide.com)

Property of J McCoy/M Holt; not to be copied w/o permission 4 Adults w/IDD: Confronting Challenges 04/13/2018 Across the Health Care Continuum

Secondary Conditions of What is Health? Concern to Older Adults with CP (Long & Kavarian, 2008)

• Musculoskeletal deformities • Falls • Pain • Osteoporosis Previous Current • Cervical spine stenosis • Fractures • Absence of: • Global state of well-being: • Deconditioning • Pressure sores . Disease . Social . Disability . Emotional • Change in skills • Emotional issues . Mental

(Long & Kavarian, 2008)

Disability Models

Medical Social

(http://ukdhm.org/what-is-ukdhm/the-social-model/)

The biopsychosocial model.9. Interaction among the components of the International Classification of Functioning, Disability and Health (ICF) model of functioning and disability.5.

© 2014 by American Physical Association

© 2014 by American Association

Property of J McCoy/M Holt; not to be copied w/o permission 5 Adults w/IDD: Confronting Challenges 04/13/2018 Across the Health Care Continuum

Top 5 Reasons for Complications Hospitalization of Adults w/ID Following Hospitalization • People w/ intellectual disabilities (ID) have higher rates of complications than do patients w/o ID hospitalized for the same reasons. Seizure Respiratory Psychoses Disorders • Potentially avoidable conditions: HCAIs, healthcare- acquired skin breakdown, falls, & medication errors/reactions.

Septicemia Pneumonia • Adults w/ IDD tended to be 2x as likely to have complications following a surgical procedure & were nearly 4x as likely to have complications if they had multiple chronic health conditions. (Ailey et al, 2014) (Ailey et al, 2015)

Complications Fall Risk Factors (Ailey et al, 2015) (Brady & Lamb, 2008; Renfro et al, 2017)

Table 1. Intrinsic fall risk factors by population • Respiratory • Integumentary General elderly population Individuals w/ developmental disabilities (in addition to general • Pain factors) Age Seizures (monthly or more) • Falls Use of an assistive device History of destructive behavior History of falls Change in behavior • Behaviors Visual impairments Antipsychotic medications Muscle weakness • Deep Vein Sleep disturbances Gait deficits Thrombosis Dizziness, postural hypotension Syncope • /Sepsis (Centerforchange.com) impairments

From: A Conceptual Model for Identifying, Preventing, and From: A Conceptual Model for Identifying, Preventing, and Managing Secondary Conditions in People With Disabilities Managing Secondary Conditions in People With Disabilities Phys Ther. 2011;91(12):1728-1739. doi:10.2522/ptj.20100410 Phys Ther. 2011;91(12):1728-1739. doi:10.2522/ptj.20100410 Phys Ther | © 2011 American Physical Therapy Association Phys Ther | © 2011 American Physical Therapy Association

Property of J McCoy/M Holt; not to be copied w/o permission 6 Adults w/IDD: Confronting Challenges 04/13/2018 Across the Health Care Continuum

Hospital Experience (Iacono et al, 2014)

" ...despite 20 years of research & government initiatives, people with intellectual disability continue to have poor hospital experiences." (From Bing images)

(Iacono et al, 2014) (Iacono et al, 2014)

• Delayed or no appropriate Fear of hospital Failure of diagnostic procedures encounter by • Not knowing what to expect hospital staff to person w/ ID • Diagnostic overshadowing • Not understanding situation; provide care fear of unfamiliar situation/environment • Failure/inability to identify/treat pain

• General fear of nurses, • Failure to heed or respond to doctors, medical procedures caregiver info

(i2.wp.com) • Lack of d/c planning/strategies/ (s.marketwatch.com) care continuity

(Iacono et al, 2014) (Iacono et al, 2014)

• Lack of pt info re: underlying Poor or negative Hospital staff • Discrimination re: denial of conditions attitudes by hospital knowledge & skills diagnostic procedures or tx staff toward • "Not knowing that people w/ID can experience same range of persons w/ID • Indifference to persons w/ID & problems as others, &/or are at their caregivers high risk for some conditions (e.g. epilepsy)" • Lack of caring/communication w/person w/ID &/or • Ineffective responses to family/support persons challenging behaviors (pinterest.com) (pinterest.com) • Lack of training re: ID

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(Iacono et al, 2014) (Iacono et al, 2014)

Staff or system • Long waiting room wait times • Hospital staff overreliance on failure to adjust Caregiver family/paid caregivers to assist • Failure to adjust communication w/ADLs & medical care to needs of based on need responsibility persons w/ID • Enhanced advocacy role • Inadequate assist w/eating or toileting

• Polypharmacy coordination home vs. hospital

(i2.wp.com)

(Safespaceradio.com)

(Iacono et al, 2014) Hospital Experiences Themes (Iacono et al, 2014)

• Fear of hospital • Staff or system failure to encounter by person w/ Hospital care • Repeat experiences w/same pt adjust to the needs of ID persons w/ID ENHANCERS • Hospital liaison • Failure of hospital staff to • Caregiver responsibilities • Hospital policies/systems that provide care enhance adjustment to • Hospital care enhancers systems/processes • Hospital staff knowledge & skills • Willingness to go above & beyond re: communication/ needs • Poor or negative attitudes by hospital staff towards (i3inc.ca) (Strategylab.ca) people w/ID

Triple Aim Health Care Reform Law (IHI.org (Institute for Health Care Improvement)) (www.healthcare.gov)

• Improving the patient experience of care (including quality & satisfaction) • Benefits . Developing an appropriate plan of care encompassing needed in house services, including a discharge plan to allow for continued & optimal care across the continuum of care • Access to quality care

• Long term services • Improving the health of populations & supports

• Reducing the per capita cost of (projectangelheart.org) (http://static.politifact.com.s3.amazonaws.com/politifact/photos/GYI_97838620_ BARACK_OBAMA.JPG) health care, reducing hospital readmissions

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Health Care Reform Law Provisions Most Important for People w/IDD Hospital Readmission Reduction (www.cms.gov) (www.cms.gov)

• Prohibiting private health insurance exclusions for pre- • Focusing on better existing conditions coordination of care & communications between providers, patients, & their • Eliminating annual & lifetime caps in caregivers. private insurance policies • Improving discharge planning, education, & • Restricting the consideration of health follow-up for discharged status in setting premiums patients.

(img.webmd.com) • Using electronic medical • Expanding Medicaid to cover individuals records to share information (Galloway et al, 2016) w/incomes up to 133% of the federal poverty line & provide continuity of care

Hospital-Acquired Condition Geoffrey (HAC) Reduction Program

Encourages hospitals to improve patient safety & reduce the number of HACs, e.g. pressure sores & hip fxs after .

Performance across 5 HCAIs: . Central Line-Associated Bloodstream Infection (CLABSI) measure . Catheter-Associated Urinary Tract Infection (CAUTI) measure . Surgical Site Infection (Colon Surgery & Abdominal Hysterectomy) (SSI) . Methicillin-Resistant Staphylococcus Aureus (MRSA) . NHSN Clostridium Difficile (C-diff)

(www.CMS.gov)

Examination/Evaluation Guidelines Elements of the Patient/Client Management Model. • Gather a pertinent • Obtain an historical description of baseline functioning • Obtain a description of current functioning, & compare to baseline • Perform a focused review of systems • Review medication list • Obtain a pertinent family history • Assess other psychosocial issues or changes • Review social history, living environment, & level of support 2nd ed. Phys Ther. 2001;81:9-744 • Synthesize the information 3.0. 2014. Available at http://guidetoptpractice.apta.org © 2014 by American Physical Therapy Association (Moran, 2013)

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Prior Level of Function Care Provider Concerns

• Patient interview • Caregivers may have difficulty communicating the functional, emotional, & social needs of the individual • Family interview • Caregivers may be unaware of available individual • Caregiver interview resources. . Community resources: eg. home health, aide • Review of patient’s plan of care assistance, workshops, day care

. CILA= Implementation Strategy (Ndss.org) . Technological advances . ICF/DD= Personal plan . Securing appropriate equipment . Community Based= plan of care/patient/ family interview . Caregiver support groups/respite (Safespaceradio.com)

The Need for Baseline Performance Prior Level of Function

• The NTG concurs that a baseline function be established • ADLs in midlife (around 40 for individuals w/ Down’s Syndrome • IADLS & 50 for individuals w/ID). • Home environment • Work • Baseline performance is established as best • Leisure performance & can be used as a base measure of • Cognition change.  Individuals with IDD may live at home w/ family, in apartments, or group homes w/ caregivers.

• Considering that fall risk increases at age 35 for  Clear concise description of function should be individuals w/ IDD, an accurate measure of function is communicated to acute hospital caregivers & should essential to provide continuum of care. include complete information on IADL function, communication style, strengths & weaknesses, & (Jokinen et al, 2013) behaviors.

Sample Assessment/ National Task Group on Outcome Tools ID/Dementia Practice Principles • Promote quality of life. • Plan & provide services • AM-PAC Functional Assessment • Use a person-centered that effectively support • Barthel (Cuesta-Vargas & Perez-Cruzado, 2014) the individual to remain in approach. chosen home & • CARE TOOL (cms.gov) community. • Elderly Mobility Scale • Affirm individual strengths, capabilities, skills, & • Provide access to • Functional Independence Measure (FIM) services & supports • Katz (Wallace & Shelkey, 2008) wishes. available to other persons • Waisman ADL (W-ADL) (Maenner et al, 2013) • Involve the individual, in the general population family, & other close affected by dementia. • http://www.ptnow.org/FunctionalLimitationReporting/TestsMeasures/ supportive persons. • Undertake proactive • https://www.sralab.org/rehabilitation-measures strategic planning across • ANPT Clinical Practice Guideline: A Core Set of Outcome Measures • Access & make available policy, provider, & for Adults w/Neurologic Conditions Undergoing Rehabilitation appropriate diagnostic, advocacy groups. (neuropt.org) assessment, & service resources. (Jokinen et al, 2013)

Property of J McCoy/M Holt; not to be copied w/o permission 10 Adults w/IDD: Confronting Challenges 04/13/2018 Across the Health Care Continuum

Early Mobilization (http://www.tampavaref.org/safe-patient-

(Olkowski & Stolfi, 2014) Click to add text handling.htm) • Bedrest & deconditioning • Proactive respiratory interventions • Safe Patient Handling • Appropriate & safe seating system . If individual uses custom chair, every effort should be made to have it available when hospitalized. • Include considerations of braces needed for postural control, helmets, management, weight bearing.

(http://www.tampavaref.org/ safe-patient-handling.htm) Transfer Considerations

• Bed or chair height • Weight bearing limitations/restrictions • Level of communication • Pain • Strength impairments • ROM restrictions Inadequate flexion Inadequate ankle dorsiflexion Insufficient trunk flexion

Transfers Stand Aid

• Sit to Stand/Stand Pivot • Benefits

Hand held assist for tactile Helps to maintain/ cueing preserve/ enhance Use of assistive devices weight bearing ability & (, cane, etc.) function of upper/ lower extremities Gait belts per facility policy/therapist recommendations Promotes patient to be • Goal: Maintain/ preserve / active & engaged in enhance weight bearing ability the transfer & function http://www.medcarelifts.com/uploads/Stand-Aid-Manual-Low%20Res_wm.pdf

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Stand Mechanical Lift Tram

• Benefits • Seated lift transfer Helps to maintain/preserve/enhance weight bearing ability . Toileting & function of UEs/LEs . Weighing Helps to preserve toileting ability • Sit to stand w/ saddle strap Helps to maintain or improve ROM/ • Ambulation w/ saddle strap strength of UEs & LEs  Provides body weight support • Harness Types  Affords safe patient handling Chest harness  Reduces fall risk Chest harness w/ leg support

http://tollos.com/index.php/component/allvideoshare/video/action- https://www.rifton.com/products/lift-and-transfer-devices/rifton-tram bed-to-chair-steady-aide-product-demonstration

Orthopedic Algorithm Essential Selection Considerations* Considerations • Choose correct functionality of the sling. *consider orthopedic/surgical precautions • Select appropriate size. when selecting sling style/size • Maintain affected body part(s) alignment according to pre/post-op guidelines. • Features of sling: . Long seat • Combi or . Consider where material covers patient. split sling . Strap options for seated . Seated slings back height • If alignment/positioning guidelines cannot be met w/sling accessory available, transfer in supine, w/sheet style sling or anti- . Frictionless device for lateral transfer to stretcher chair friction methods; then sit upright. The “Patient Care Sling Selection and Usage Toolkit” is available for download at: (Sedlak et al, 2009) http://www.visn8.va.gov/patientsafetycenter/safePtHandling/toolkitSlings.asp

Full Mechanical Lift RED/BLUE/BLUE Combi

Most erect seating posture; hips abducted

http://www.tollos.com/index.php/products/safe-patient-handling/mobile-electric-patient- lifts/2-products/mobile-lift-solutions/23-ultra-lift-series-mobile-floor-lift

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YELLOW/BLUE/BLUE Combi GREEN/BLUE/BLUE Combi

Almost fully reclined, Trunk reclined, less hip flexion, legs less hip flexion, abducted hips abducted

RED/BLUE/BLUE Long Seat YELLOW/BLUE/BLUE Long Seat

By using By using a longer shorter loop loop at the head, at head, the the patient is in a patient is more reclined semi- position. reclined.

Improved Hip Strap Positioning Slide Sheets/Turn & Using Long Seat Position Systems • Slide sheets & tubes  Used for lateral transfers & repositioning  Can transfer to stretcher chair http://www.tollos.com/images/stories/tollos_documents Long seat sling may _2014/lateral_transfers/Single_Patient_Use_AirPal.pdf be more comfortable for individuals w/ • Turn & Position or hip  Used for lateral transfers, repositioning, pinning. The middle turning, & bolster/wedge strap should be at the  Promotes improved ergonomics hip joint.  Improves patient comfort during positioning process https://www.medline.com/product/Comfort-Glide- Repositioning-Sheet/Drawsheets-and-Positioning- Sheets/Z05-PF80216

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Individual & Caregiver CARE COORDINATION Characteristics

• 71% individuals w/IDD live w/family caregiver . 24% caregivers >=60 yrs of age . 35% caregivers 41-59 yrs of age

• 13% adults w/IDD live in supervised residential settings (Ndss.org) . 100,000 on waiting lists for residential services (2014) . 216,000 waiting for any type of long term services/support (2017)

• Aging caregivers have their own unique challenges

• Only 15% of family caregivers receive public resources

(Wordpress.com)

(Au et al, 2011) (Au et al, 2011)

(Au et al, 2011)

(https://www.eiseverywhere.com/file_uploads/)

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(Orlin et al, 2014) Rush University Medical Center (RUMC) Program

• • Retrofitting old buildings • Staff training, disability awareness • Community partnering • AIDDC Committee (2007): Adults w/Intellectual & Developmental Disabilities (Multi-disciplinary)

Ar (Ailey & Hart, 2010) (http://aida-architecture.blogspot.com/2015/ 10/rush-university-medical-center-by.html)

Disabled Access & RUMC AIDDC Services

“RUMC is dedicated to caring for & supporting people w/ disabilities & their Mission: Sample Actions: families. We offer people w/ disabilities a safe & supportive environment in • concerns: which to receive care. Rush was cited as “setting the standard of "To foster awareness, . avoid upset, provide calm excellence in America” in a major report funded by the Robert Wood . explain hospital procedures Johnson Foundation on the crisis of health care for people w/ disabilities. sensitivity, & skills related to . assess pain levels Coming to the hospital can be particularly stressful & overwhelming if you individuals w/intellectual & . prepare for d/c or your loved one has an intellectual or developmental disability. Rush developmental disabilities in • Developed communication offers customized services to help make sure you have a positive materials experience here.” order to promote (https://www.rush.edu/patients- partnership in the • Acquired multisensory visitors/patients/disabled-access-and- • helpline healthcare experience." materials serviceshttps://www.rush.edu/patients- • Revised admission forms • Special needs buddy program visitors/patients/disabled-access-and-services) • Hospital tours • Staff education (Ailey & Hart, 2010; Berthold, 2014) • Prehospitalization program To take advantage of any of these services, please contact us at: (312) 942-7806 • Explore satisfaction data [email protected]

(https://udlhcpss.files.wordpress.com/ 2011/11/principles_ud.png) ADA Resources

Name Description Link

Americans with Provides information re: this historic 1990 https://www.ada.gov/ Disabilities Act (ADA) legislation & revisions in 2010 & 2016

Americans with Discusses the amendments to the ADA, which https://www.eeoc.gov/laws/st Disabilities Act broadened the definition of disability (& have atutes/adaaa_info.cfm Amendments Act of 2008 been incorporated in to more recent ADA (ADAAA) revisions)

2010 ADA Standards for Provides information re: minimum https://www.ada.gov/regs201 Accessible Design requirements for standards for 0/2010ADAStandards/2010A new or altered construction DAstandards.htm

2010 ADA Access to Part I: Overview & general requirements https://www.ada.gov/medcare Medical Care for Part 2: Commonly Asked ?s _mobility_ta/medcare_ta.htm Individuals w/Mobility Part 3: Accessible examination rooms Disabilities Part 4: Accessible medical equipment

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Additional Information Links (cont’d) Additional Information Links (Ho, 2017)

Name Description Link NAME DESCRIPTION LINK

National Center on Birth Defects & Provides valuable information & https://www.cdc.gov/ncbddd/ Rehabilitation Research & Training Provides info regarding research, http://www.rrtcadd.org Developmental Disabilities resources related to developmentaldisabilities Center on Developmental publications, training, & resources (NCBDDD), Centers for Disease developmental disabilities, Disabilties and Health r/t persons w/disabilities Control and Prevention (CDC) including direct links to & (RRTCADD, US) descriptions of related web sites (Tamar Heller (UIC), Director)

DisabilityMeasures.org Provides open access http://disabilitymeasures.org/ measurement tools for children/adolescents/adults w/disabilities Centre for Developmental Provides education & training for http://www.cddh.monash.org Disability Health Victoria (CDDH health care professionals, clinical American Association on Promotes polices, research, http://aaidd.org/ Monash, Canadian) supports, & service innovation r/t Intellectual & Developmental practices, & rights r/t IDD, persons w/disabilities Disabilities (AAIDD) including educational resources

International Classification of Discusses this unifying framework, https://www.cdc.gov/nchs/ Center for Applied Disability Provides lines of inquiry & http://www.cadr.org.au Functioning, Disability, & Health, collaborations, & resource links. icd/icf.htm Research (CADR, Australian) clearinghouse database r/t CDC, National Center for Health persons w/disabilities Statistics (NCHS)

APTA RELATED RESOURCES

NAME LINK/EXAMPLE

American Physical http://www.apta.org/ Therapy Association (APTA) Copyright 2014, Section on , APTA. Developed by the Adolescents and Adults With APTA Sections/ https://pediatricapta.org Developmental Disabilities Academies / Special-Interest Group of the Welcome Guest Panel; Section on Pediatrics, APTA, with Special Interest APTA Academy of special thanks to expert Thank You!!! Groups (SIGs) Pediatric PT (APPT), contributors Mary Gannotti, PT, Adolescents & Adults w/Developmental PhD, Lorrie Sylvester, PT, PhD, Disabilities SIG and Susan LaCourse, PT, MS. https://pediatricapta.org/includes/fact- sheets/pdfs/14%20AADD%20Health%20Care %20Issues.pdf

Material presented at IPTA 2016 REVITALIZE Conference

Case Discussion----April Case Discussion----April

• 49 y/o female Short Term Goals Long Term Goals • Profound ID/Down Syndrome • Presented to ER from group home • Pt will be able to transition (DreamChoosers.com) w/fever, cough, & change in supine<>sit w/not more than • Pt will be safely assisted by mentation (min) A 50% of trials. caregiver for bed mobility, transfers, & ambulation on levels • 13 day acute hospital admission • Pt will be able to ambulate & stairs at (TBD'd) PLOF. due to pneumonia w/acute >=100' w/HHA (or LRAD) of 1 person w/CGA at least 50% of • Prevent any new alterations in • Transferred to SAR, 12 days, due trial. skin integrity throughout SAR stay. to ADL/mobility dysfunction (bedbathandbeyond.com) • Pt will be able to asc/desc 5 • Further LTGs deferred until steps w/2 rails & not more than specifics of PLOF/living situation min A of 1. further clarified.

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Case Discussion----Megan What We Need to Know

Megan is a 35 y/o female w/Quadraparetic CP, • What type of lift? Rifton Tram hospitalized w/Breast for B mastectomies. She resides in a group home & attends workshop. • What type of bed? Sleep Number Bed Transfers w/Tram in group home. • How is she toileted? Rifton Tram

This is an anticipated hospital admission. • What type of WC does she have? Power mobility w/ custom seating

• What is her cognitive functional ability? High functioning

• Vocational pursuits? Attends community workshop & is employed at her father’s two days/week.

Care Processes & Megan - Progressed From FML to Discharge Planning TRAM After Post-Op Recovery

• Early mobilization w/full mechanical lift. She works at her • Power is in room to allow for transfers into Father’s customized seating system. pharmacy.

• Address appropriate positioning of BUEs to decrease edema & protect incisions; educate Megan & caregiver(s) on lymphedema precautions. She has • Educate group home manager on temporary need for full written her mechanical lift. Request home health & PT as indicated. life story. • Educate Megan, caregiver(s), & on the appropriate time to resume Tram lift & Tram .

Passport to Passport to Person Centered Care Person Centered Care

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Moving Forward: Reducing Health Perspective on Health Care Disparities for People w/IDD

• Monitor & treat chronic conditions optimally. “I expect honesty and • Enhance for aging w/IDD. respect. If you have • Address health needs of individuals not connected with questions, direct them to services. me. I want you to know • Include people w/IDD in health & wellness programs. that I understand • Efficiently & effectively address health care needs of persons w/IDD. everything you say. “

Vision Statement for the Physical Therapy Profession “Transforming society by optimizing movement to improve the human experience.” (apta.org)

Monday Morning… Optimal Health: (Rimmer et al, 2011, p.1129)

• Incorporate baseline & outcome measures. “The resilience of people who succeed in • Prevent/minimize secondary conditions. achieving a positive balance between gains and losses in health across the lifespan” • Incorporate & recommend appropriate AT.

• Advocate, advocate, advocate!

Small changes can make a big difference!

(Rimmer et al, 2011)

References (1 of 6) References (2 of 6)

Ailey SH, Hart R. Hospital program for working with adult clients with intellectual Berthold, J. Remembering, and respecting, the most vulnerable. ACP and developmental disabilities. Intellect Dev Disab. 2010;48(2):145-147. Hospitalist. 2014(12):1-5.

Ailey SH, Johnson T, Fogg L, Friese TR. Factors related to complications among Brady R, Lamb V. Assessment, intervention, and prevention of falls in elders with adult patients with intellectual disabilities hospitalized at an academic medical developmental disabilities. Top Geriatr Rehabil. 2008;24(1):54-63. center. Intellect Dev Disab. 2015;53(2):114-119

Ailey SH, Johnson T, Fogg L, Friese TR. Hospitalizations of adults with intellectual Cuesta-Vargas A, Perez-Cruzado D. Relationship between Barthel index with disability in academic medical centers. Intellect Dev Disab. 2014;52(3):187-192. physical tests in adults with intellectual disabilities. SpringerPlus. 2014;3:543.

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