A GPS for Families of People with Special Needs
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A GPS for Families of People with Special Needs
SPAN Health Advocacy Across the Lifespan Manual Page 1 Introduction I wrote this manual to help other families of individuals with special needs and the professionals who work with them. My daughter now has 5 life-threatening conditions, and autism just to keep things interesting. We have been through everything from early intervention to currently going through transition to adult care. I hope this helps you on your journey. Lauren Agoratus NJ Coordinator-Family Voices @ SPAN
SPAN Health Advocacy Across the Lifespan Manual Page 2 Table of Contents
SPAN Health Advocacy Across the Lifespan Manual Page 3 ...... Early & Continuous Screening Families may be concerned that their child isn’t doing what they should be by a certain age. One of the Maternal and Child Health Bureau (MCHB) six core outcomes for children with special needs is, “Children are screened early and continuously for special health care needs.” There are excellent checklists for parents available from the Centers for Disease Control & Prevention “Act Early” at http://www.cdc.gov/NCBDDD/actearly/milestones/index.html. Bright Futures, the American Academy of Pediatrics’ health promotion website, has “What to Expect & When to Seek Help” at http://www.brightfutures.org/tools/. Families should bring their concerns to their pediatrician as parents are often the first to notice. Pediatricians also have screening tools that can help decide if more evaluation is needed to make a diagnosis, or they may make a recommendation to a specialist. The American Academy of Pediatrics (AAP) has recommendations for developmental screening at http://www.aap.org/en-us/about-the- aap/Committees-Councils-Sections/Council-on-Children-with-Disabilities/Pages/Description-and- Policy.aspx. If the pediatrician has a “wait and see” approach, the family could continue to express their concern or perhaps request a referral. First Signs has tips on having a discussion with the pediatrician at http://www.firstsigns.org/concerns/if.htm. Families can also suggest to their pediatrician/family practitioner that they review the resources and recommendations from the AAP including those found on the AAP’s National Center for Medical Home Implementation at http://www.medicalhomeinfo.org/. This website includes a section on evidence-based guidelines and screening resources at http://www.medicalhomeinfo.org/how/clinical_care/.
Diagnosis
Photo www.cdc.gov When families are just getting a diagnosis, they need information on the condition and emotional support. Exceptional Parent magazine has an annual resource guide that lists all the national organizations for specific conditions at http://digital.turn-page.com/t/99327 (click on preview, then archived.) For detailed information including research, databases, literature, etc., the Maternal & Child Health Bureau (MCHB) has “Knowledge Paths” on some conditions at http://www.mchlibrary.info/KnowledgePaths/index.html and resources for families at www.mchlibrary.info/families/index.html. The National Dissemination Center for Children with Disabilities information on specific disabilities can be found on the Parent Center Hub website at http://www.parentcenterhub.org/repository/specific-disabilities/ or Spanish http://www.parentcenterhub.org/repository/aprendizaje/. For emotional support, there are matching groups like Parent-to-Parent and Friends Health Connection (see Support: Individuals/Families section.) Other good resources on specific conditions are:
Health A-Z – Health Central www.healthcentral.com
SPAN Health Advocacy Across the Lifespan Manual Page 4 Health Conditions - WebMD http://www.webmd.com/
Health Conditions & Diseases - Health Finder: U.S. Department of Health & Human Services http://www.healthfinder.gov/HealthTopics/Category/health-conditions-and- diseases Spanish http://www.healthfinder.gov/espanol/ click on “Recursos de salud”
Health Issues: Conditions - American Academy of Pediatrics-information for families http://www.healthychildren.org/English/health-issues/Pages/default.aspx Spanish http://www.healthychildren.org/spanish/health- issues/paginas/default.aspx
Health Problems (click on Las Enfermedades) – Kids Health English http://kidshealth.org/kid/health_problems/ Spanish http://kidshealth.org/kid/en_espanol/index.html? tracking=80002_F#cat20289
Health Topics – Medline Plus www.nlm.nih.gov/medlineplus/healthtopics.html Spanish http://www.nlm.nih.gov/medlineplus/spanish/healthtopics.html Developmental Disabilities – Medline Plus http://www.nlm.nih.gov/medlineplus/developmentaldisabilities.html Disabilities - Medline Plus http://www.nlm.nih.gov/medlineplus/disabilities.html
Explaining the Diagnosis/Self-Awareness Families will often know when their child is ready to find out about their diagnosis because their child starts asking questions. Children may ask, “Why I am I different,” or “Why is it so much harder for me to do things?” Sometimes children may just want to know what something is called, other times they may want their parents to explain what it means. Families can start with children’s books that explain certain conditions. Children need to understand that they are not “better or worse,” simply different. They should also explain that a diagnosis doesn’t define their life or their future. There is good information, including explaining the diagnosis to the child, from Kids Health at http://kidshealth.org/parent/medical/ or in Spanish at http://kidshealth.org/parent/en_espanol/index.html. Physical or visible disabilities can be easier to explain and to understand for children (and even adults). Cognitive disabilities, autism spectrum disorders, and learning disabilities may be more difficult to explain and understand. Families may want to discuss their child’s condition privately until they are ready to understand. Once the child is aware of their diagnosis, it’s easier to be more open. It’s almost like the “sex talk.” If parents pay attention to their child, they will know that their child is ready. Families can figure out exactly what the child is asking and how much they need to know. For older children there is a publication called Accepting My Disability at http://www.going-to- college.org/myplace/disability.html.
SPAN Health Advocacy Across the Lifespan Manual Page 5 Sometimes families think they are protecting their child by not telling them about their disability or special healthcare needs. Unfortunately, this places their child at a disadvantage because they do not learn how to understand their disability or advocate for the accommodations and supports that they need. Explaining the diagnosis is one of the first steps toward building the self- awareness and skills needed for independence.
Early Intervention
Photo-NICHCY.org
Early Intervention is a system that serves children from birth to three who have disabilities or developmental delays. In NJ, there is a family “cost sharing” for services for families whose income is up to 350% of the Federal Poverty Level (FPL). However, services that are at no cost to families include Child Find (identifying and referring a child), Service Coordination (similar to case management), Evaluation & Assessment, IFSP (Individualized Family Service Plan) Development and Review, and Procedural Safeguards (e.g., parent consent, complaint resolution, etc.) The NJ Early Intervention System (NJEIS) information can be found at www.state.nj.us/health/fhs/eis/index.shtml. There are also “Regional Early Intervention Collaboratives” which are nonprofits that “plan and coordinate the state's early intervention system at the regional/community level” and can be found at www.njeis.org/. The National Dissemination Center for Children with Disabilities excellent overview of early intervention can be found at the Parent Center Hub website at www.parentcenterhub.org/?s=early+intervention or Spanish www.parentcenterhub.org/?s=intervencion+temprana.
Child Care Photo-childandfamily-nj.org Families of children with disabilities need to know that a child care provider can accommodate their child appropriately. The Inclusive Child Care Project (NJICCP) works to increase inclusion of young children with special needs in child care centers and other typical early childhood settings and can be found at www.spanadvocacy.org/content/inclusive-child-care- project (English/Spanish). There are also statewide resources listed by the Map to Inclusive
SPAN Health Advocacy Across the Lifespan Manual Page 6 Child Care Team at www.state.nj.us/humanservices/clients/family/special/. For children who are medically fragile, NJ has Pediatric Medical Daycare at http://web.doh.state.nj.us/apps2/healthfacilities/fsSearch.aspx. Families can also add an Individual Health Plan to an IEP/504 plan that could include afterschool care at www.spannj.org/Family2Family/individual_health_plan.htm. If the district runs an afterschool program, they should accommodate children with special needs. Most families don’t know their child’s rights (for example, they do not need to be potty trained) or the responsibilities of child care providers. There is an excellent factsheet on what is legally required at www.state.nj.us/humanservices/clients/family/special/10_ChildCare_NJLawAgainstDiscriminati on_columns%20.pdf.
Genetics & Rare Disorders
Photo-teachersnetwork.org Learning about and understanding how genetics affects their child’s condition may help families feel as if the child’s symptoms finally “have a name.” Genes in Life explains the basics of what genetics means for families at http://genesinlife.org/genetics-101/why-learn-about-genetics. Another good resource is the Genetic Alliance which has a variety of information including “Children and Youth with Special Healthcare Needs in Healthy People 2020: A Consumer Perspective” at www.geneticalliance.org/publications/healthypeople. If parents find out that their child has an unusual condition, there is good information available from the National Institutes of Health at http://rarediseases.info.nih.gov. There is also a searchable database available from the National Organization for Rare Disorders at www.rarediseases.org/rare- disease-information/rare-diseases. For chromosomal disorders, there are descriptions of genetic testing and conditions available from Unique at www.rarechromo.org/html/ChromosomesAndDisorders.asp. There is even information on organ transplants for children with developmental or other disabilities at http://rwjms.rutgers.edu/boggscenter/products/documents/TransplantPampletFINAL6-11.pdf. If families know ahead of time what to expect, they can take better care of their child, and the child will reach their personal best potential. General Important Information
SPAN Health Advocacy Across the Lifespan Manual Page 7 Accessibility
Photo-Millikin.edu After Medicaid managed care was mandated for the ABD (aged, blind, disabled) population in NJ, accessibility became an issue. Patients with disabilities were not able to physically access doctor’s offices whether it meant lacking wheelchair access ramps to get through the front door, assistive devices to get on the exam table, etc. However, accessibility goes beyond the physical. For example, there should be interpreters available when needed, whether it is for someone with a hearing impairment or who speaks English as a Second Language (ESL). For more on interpretation, see also the section on Cultural Competency. There is an excellent guide from the Office of Civil Rights called “Access to Medical Care for Individuals with Mobility Disabilities” at www.ada.gov/medcare_mobility_ta/medcare_ta.pdf. Beyond physical access, the Equal Rights Center has a “Healthcare Accessibility Toolkit” at www.equalrightscenter.org/site/DocServer/Accessible_Healthcare_toolkit.pdf?docID=2181. Families need to know that accessibility is simply a civil rights issue.
Advocacy
Photo-sicklecellbodypolitics.wordpress.com Beyond exercising their civil rights to access healthcare, families may need to further advocate for their child as well as themselves. For example, they may need to insist on family support services to help maintain their child at home. Family Support Services range from home or vehicle modification to respite, which is a break for family caregivers from what could be 24 hour care. According to the Caregiver Action Network, more people enter institutional care due to caregiver burnout than deterioration of their condition. The “Health Care Advocacy Across the Lifespan” booklet by the Statewide Parent Advocacy Network and Hinkle, Fingles & Prior Law Firm is a good starting point and can be found at www.spanadvocacy.org/content/healthcare-advocacy-across-lifespan-what-parents-children- disabilities-need-know. There are other advocacy tools throughout this manual in the categories under which they fall.
SPAN Health Advocacy Across the Lifespan Manual Page 8 Self-Advocacy in Healthcare
In addition to advocacy by families, children with special needs will learn how to advocate for themselves. One of the easiest things families can do to foster self-advocacy is to give their child choices. It can be something as simple as asking a toddler or preschooler which outfit they would like to wear, or asking an older child if they would like to do math or spelling homework first. If a child doesn’t have a choice regarding getting an injection or lab work, the family can instead ask the child which arm they would prefer to have the work done on. The Wyoming Council on Developmental Disabilities’ coloring book for children can be found at http://ddcouncil.state.wy.us/KidsCRSpring12.pdf. For older children and self-advocates the National Gateway to Self-Determination has "It’s My Future” at http://ngsd.org/sites/default/files/its_my_future.pdf or the iPad app www.ngsd.org/news/its-my- future-ipad-app. They also have “My Health, My Choice, My Responsibility” which includes forms for health information, health plans, and appointments as well as an iPad app at www.ablelinktech.com/myhealth. The National Institute on Disability autisticadvocacy.tumblr.com and Rehabilitation Research has “This is Your Life! Creating Your Self-Directed Plan” which also includes mental health resources and is available at http://www.ngsd.org/news/my-health-my-choice-my-responsibility-ipad- app.http://www.cmhsrp.uic.edu/download/sdlifeplan.pdf. Other relevant resources include:
Healthcare Frequently Asked Questions: Self Advocacy Series - Disability Rights NJ http://www.drnj.org/pdf/drnj%20FAQs%20healthcare%20final%20version%20for %20web.pdf
Being a Healthy Adult: How to Advocate for your Health and Healthcare – Boggs Center on Developmental Disabilities (NJ) in English and Spanish and read aloud, at http://rwjms.rutgers.edu/boggscenter/products/BeingaHealthyAdultHowtoAdvocateforY ourHealthandHealthCare.html
My Health Passport - University of South Florida - AUCD English
http://flfcic.fmhi.usf.edu/docs/FCIC_Health_Passport_Form_Typeable_English.pdf or on the SPAN website at www.spannj.org/cyshcn/core_outcome_6/Health_Passport_English.pdf Spanish http://flfcic.fmhi.usf.edu/docs/FCIC_Health_Passport_Form_Typeable_Spanish.pdf or
SPAN Health Advocacy Across the Lifespan Manual Page 9 on the SPAN website at www.spannj.org/cyshcn/core_outcome_6/Health_Passport_Spanish.pdf
Speak Up Guide University of Alaska - AUCD www.uaa.alaska.edu/centerforhumandevelopment/selfdetermination/upload/Speak_Up_ Guide.pdf
Stigma/People First Language
In addition to cultural competency, there must be no stigma for physical and mental health conditions. People first language means the person comes first, then the description. It wouldn’t be said that someone is cancer, but rather that they have cancer. The disease does not define the person. Further, biologically based mental illness is just like any other physical condition. An individual with diabetes would not be blamed for their illness or for the use of medication to treat it. Mental illness is like any other illness except the organ affected just Photot- peaceproject.com happens to be the brain, which symptoms manifest as behavior. There is an appropriate way to talk with and about people with disabilities. For example, children with special needs should think of themselves as “differently abled.” A variety of resources are listed below:
Disability Etiquette-United Spinal Association (various disabilities) http://www.unitedspinal.org/pdf/DisabilityEtiquette.pdf
People First Language- Disability is Natural English http://www.disabilityisnatural.com/images/PDF/pfl09.pdf Spanish http://www.disabilityisnatural.com/images/PDF/pfl09spanish.pdf
People First Language - Self Advocates Becoming Empowered http://www.aucd.org/docs/People%20First%20Language%20Manual.pdf
Stigma: Language Matters - MD Mental Hygiene Administration http://www.onourownmd.org/wp-content/uploads/2011/12/LM-Flyer-Artwork207.pdf
Those of Us DisLabeled-(see Chapter 3) http://www.hdi.uky.edu/Media/Default/Documents/DisLabeled.pdf
Cultural Competence
SPAN Health Advocacy Across the Lifespan Manual Page 10 Photo-mocmhc.org All families deserve to have healthcare access in a culturally competent manner. NJ was the first state to require cultural competency training for health providers. The NJ Statewide Network for Cultural Competence is at www.state.nj.us/njsncc/index.shtml or www.facebook.com/NJStatewideNetwork. One of the key concepts of the medical home (also see section on Medical Home) is cultural competence, which means that the “family’s culture and religious beliefs are recognized, valued, and respected.” Cultural competency will help eliminate health disparities (which means that there are worse outcomes including death), addressed in our blog at www.spanadvocacy.org/content/unfair-access-healthcare-affects-our- families-lauren-agoratus. Family Voices national has information on “Diversity & Cultural Competence” at www.familyvoices.org/work/diversity. The National Center for Cultural Competence has “In Their Own Voices: Cultural Competence and Health Promotion” at http://nccc.georgetown.edu/features/voices.html.
Immigrant Issues
Photo-ijpc-cincinnati.org Closely related to cultural competency are immigrant issues. For example, many immigrant families may not realize that some family members may be eligible for healthcare coverage even if others are not. Research shows that uninsured families are diagnosed on average 2-4 years after their insured peers, often when disease has progressed or even become fatal, which makes health insurance critical. For information on how immigrant status affects eligibility for health plans in the Marketplace, see www.fv-ncfpp.org/blog/how-immigrant-status-affects-eligibility- health-plans-marketplace/. The National Immigration Law Center has an excellent “Quick Guide to Immigrant Eligibility” for ACA (and other national programs) at www.spanadvocacy.org/sites/g/files/g524681/f/files/imm-eligibility-quickguide-2013-01- 29_0.pdf.
Health Topics
SPAN Health Advocacy Across the Lifespan Manual Page 11 Affordable Care Act The Affordable Care Act (ACA) has several health care reform measures that help individuals with special needs. Effective 9/23/10 new patient protections included: No lifetime caps and limited annual caps (this means that there can no longer be a maximum amount the insurance company will pay over the individual’s lifetime.) No rescinding policies (this means that coverage can’t be dropped when someone gets sick.) No pre-existing condition exclusions (this means that coverage can’t be denied for an individual enrolling in the plan due to pre-existing conditions.) Dependent coverage to age 26 (this means that all children, both with and without disabilities, can be covered under their parent’s employer.) Prevention with no cost share (this means that wellness benefits are provided with no additional cost to families, see www.fv-impact.org/) Plans will cover 10 “essential health benefits “including:
1. ambulatory patient services
2. emergency services
3. hospitalization
4. maternity and newborn care
5. mental health and substance use disorder services, including behavioral health
6. prescription drugs
7. rehabilitative and habilitative services and devices (such as physical/occupational/speech therapy)
8. laboratory services
9. preventive and wellness services and chronic disease management
10. pediatric services, including oral (dental) and vision care *For different levels of plans, see www.healthcare.gov/choose-a-plan/plans-categories/. For New Jersey’s essential health benefits, see www.cms.gov/cciio/resources/data-resources/downloads/new- jersey-ehb-benchmark-plan.pdf.
SPAN Health Advocacy Across the Lifespan Manual Page 12 If your state has better benefits than the federal law—such as dependent coverage, preexisting condition coverage, or mental health parity—state law will still apply. Families of children with disabilities should note that the Marketplace (“exchange”) will only select one plan. Families with children who have special needs may be able to have private insurance as well as Medicaid and/or Medicare. Also, most states have a “disabled adult dependent” form that allows families of children with disabilities to keep their dependent covered as long as the parent is employed, regardless of the age of the child (get the form from the insurance company or employer before the child turns 18.) Also, even if a child didn’t previously qualify for Medicaid because of family income, at age 18 the child is considered a “family of one” and may then be eligible. In addition, some children may be dually eligible for Medicare, for example, those with kidney disease or whose parents retire. Parents need to be aware that their child with special needs could have both public and private insurance through “coordination of benefits” which means that the family would have less out of pocket expenses. A good resource on comparing plans for people with disabilities is a fact sheet from the National Disability Navigator Resource Collaborative at http://www.nationaldisabilitynavigator.org/ndnrc-materials/fact-sheets/fact- sheet-1/ \ Please note: This information does not pertain to persons in New Jersey who are enrolled in Medicaid/NJ FamilyCare because the health care benefits and coverage for Medicaid/NJ FamilyCare enrollees are all standardized and there are no out-of-pocket expenses (as long as enrollees are using providers in the network of their health plan). Families can apply for coverage during open enrollment (or special enrollment if there are life changes affecting insurance such as job loss) at the Marketplace (exchange) at www.healthcare.gov/ or Spanish www.cuidadodesalud.gov/es/. Parents and self-advocates can see how healthcare reform has helped other families in the Family Healthcare Story Book at www.spannj.org/Family2Family/NJ_Family_Healthcare_Stories_REVISED.pdf. The most up- to-date information on the ACA from the Georgetown Center for Children and Families can be found at http://ccf.georgetown.edu/aca/. Check out the ongoing blog on the ACA which includes information on people with disabilities, Medicaid expansion, finding providers before choosing a plan, mental health, how immigrant status affects eligibility (e.g. children may be eligible even if their parents are not), and more at www.fv-ncfpp.org/blog . Listen to SPAN’s recorded teleconference on the ACA at www.spanadvocacy.org/content/aca-teleconference- recording-english. *For information on help paying for costs, see https://www.healthcare.gov/lower-costs/qualifying-for- lower-costs /. For help enrolling, call 1-800-318-2596, TTY: 1-855-889-4325 or find local help at https://localhelp.healthcare.gov/.
Dental care
SPAN Health Advocacy Across the Lifespan Manual Page 13 Dental care is an important component of health care. Poor oral health can adversely affect overall physical health. Neglecting oral health can lead to the development of infections and even death (see the story of a little boy who died of a toothache (at www.hopefulparents.org/2014/02/the-little-boy-who-died-of-toothache.html.) The same story by ABC News reported that by age 11, half of all children have dental decay. National Family Voices’ blog, Why Oral Health Is Important for Children with Special Needs and How to Access It can be found at http://www.fv-ncfpp.org/blog/why-oral-health-important-children-special- needs-how-access-it/.
The Marketplace of the Affordable Care Act also has dental coverage, either as part of Qualified Health Plans, or “stand-alone” plans. Families can find out if dental benefits are included in their medical plan at www.healthcare.gov/find-premium-estimates/. Parents and self-advocates can also get information on available stand-alone dental plans at www.healthcare.gov/dental- plan-information/. Medicaid also has dental coverage. The private plan would pay first, and Medicaid would cover the difference. SPAN’s Healthcare Financing Fact Sheet Series has a fact sheet on Medicaid and oral health care at http://www.spanadvocacy.org/sites/g/files/g524681/f/files/ISG_Healthcare_Financing_Factsheet _Series_Updated_4-2013.pdf. If the family member is uninsured, Donated Dental Services provides free care and can be found at http://dentallifeline.org/new-jersey/. If the individual needs braces, Smile for a Lifetime has free orthodontics at http://slf.memberclicks.net/zip-code- search.
Bright Futures also has a guide on what families need to know about dental care at www.mchoralhealth.org/pocket.html. The American Academy of Pediatrics has information for families at English www.healthychildren.org/english/healthy-living/oral- health/Pages/default.aspx or Spanish www.healthychildren.org/spanish/healthy-living/oral- health/paginas/default.aspx. Lastly, MCHC has a “Knowledge Path” www.mchoralhealth.org/Topics/cshcn.html.
Dental health could also be affected by special needs. This could be due to the child’s poor motor skills or sensitivity to touch. The Vanderbilt Kennedy Center has an excellent publication “Oral Health Tips” at http://kc.vanderbilt.edu/kennedy_files/OralHealthTips.pdf. For individuals with developmental delays, Autism Speaks has a “Dental Tool Kit” at www.autismspeaks.org/family-services/tool-kits/dental-tool-kit. Dental health is an important part of overall health.
Emergencies
SPAN Health Advocacy Across the Lifespan Manual Page 14 Emergency care
Photo www.nhpediatricems.org Families of individuals with disabilities need to be prepared in an emergency. There are things families can do ahead of time that will make it easier to get out the door quickly with everything they need. The American Academy of Pediatrics and American College of Emergency Physicians has “Emergency Information for children with special needs” at www.acep.org/content.aspx?LinkIdentifier=id&id=26276&fid=896&Mo=No which has Emergency Information Forms and a Children with Special Health Care Needs Fact Sheet. Another great resource is Pack a “To Go” Kit available from Family Voices/ Family-to-Family New Hampshire at http://nhfv.s481.sureserver.com/wp- content/uploads/2013/10/To_Go_Kit_brochure.pdf. Please also see the Hospitalization section of this manual, which has tips whether the stay was planned or not. Emergency Preparedness (Natural Disasters)
Hopefully this information won’t be needed but is good to know. The individual could wear a medical id bracelet (caregivers can, too) and caregivers can also carry a paper copy of essential information in their wallets. NJ also has two good forms which could be used as templates; the universal health record, www.state.nj.us/health/forms/ch-14.pdf and the care plan for children with special needs, www.state.nj.us/health/forms/ch-15.pdf. NJ also has a Special Needs Registry at www13.state.nj.us/SpecialNeeds/. It’s also a good idea to register with the county Office of Emergency Management at www.ready.nj.gov/about/association.html. The NJ Council on Developmental Disabilities has information on emergency preparedness at www.njcdd.org/initiatives/emergency-preparedness/174-emergency-preparedness.
Photo www.ohsu.edu
SPAN Health Advocacy Across the Lifespan Manual Page 15 In addition to actual health records, there are other things that caregivers of individuals with special needs must consider. For example, if their medication is refrigerated or if the individual uses electrical equipment, families may want to consider an emergency generator. Family Voices national has many resources for emergency preparedness for both home and school, found at http://www.familyvoices.org/work/caring?id=0004. There’s a useful publication, “Staying in Your Home During Emergencies,” by the Wyoming Institute for Disabilities AUCD at www.uwyo.edu/wind/_files/docs/utse_resources/guide_to_sheltering_in_place_4_18.pdf. Other resources on emergency preparedness for individuals with special needs can be found at:
Emergency Management & People with Disabilities - West Virginia University- AUCD http://wvats.cedwvu.org/emergencybrochure.php
Emergency Preparedness - Temple University AUCD Pennsylvania http://disabilities.temple.edu/programs/eprep/
Emergency Preparedness for Children with Special Health Care Needs-Cincinnati Children’s Hospital www.cincinnatichildrens.org/patients/child/special-needs/home/emergencies/ (includes links for Families Planning for an Emergency, Supply Kit, and Child Identification Products) Financial Help Financial Issues & Help
Families of children with special healthcare needs and individuals with disabilities have financial burdens. According to Families USA, 60% of bankruptcies are caused by medical debt (see http://familiesusa.org/sites/default/files/product_documents/medical-debt-fact-sheet.pdf.) The Catalyst Center has a publication, “Breaking the Link Between Children’s Special Healthcare Needs & Financial Hardship,” at www.hdwg.org/catalyst/breaking-the-link There are things that families can do to avoid financial difficulties. The NJ Community of Care Consortium developed healthcare financing factsheets on topics such as Medicaid/SCHIP, Federally Qualified Health Centers and hospital charity care for the uninsured, etc. at www.spannj.org/ISG_HealthcareFinancingFactSheetSeries.pdf or www.spannj.org/cyshcn/core_outcome_3/Healthcare_Financing_Factsheet_Series_- _SPANISH.pdf. There is also the National Association of Free & Charitable Clinics at http://www.nafcclinics.org/
SPAN Health Advocacy Across the Lifespan Manual Page 16 SPAN also developed a factsheet “Economic & Health Resources for Families” for necessities at
www.spanadvocacy.org/sites/g/files/g524681/f/files/Economic%20%26%20Health %20resources_2012_0.pdf or Spanish www.spanadvocacy.org/sites/g/files/g524681/f/files/Economic%20%26%20Health %20resources%20Spanish_2012_0.pdf. These resources help with everything from housing and utilities to eyeglasses, hearing aids, etc. NJ also has the Catastrophic Illness in Children Relief Fund which reimburses families for related medical expenses above 10% of household income in any 12-month period. These expenses can include mileage/parking/tolls, phone calls to doctors, hotel stays during hospitalization, etc. The Fund also covers medically necessary home modifications up to $25,000 for things like accessible bathrooms, grab bars, etc. Families must be able to submit receipts and proof of payment. The application can be found at www.state.nj.us/humanservices/cicrf/home/index.html. NJ has a referral line by calling 2-1-1 or going to www.nj211.org/ or Spanish http://translate.google.com/translate?u=http %3A//www.nj211.org/&hl=en&langpair=auto|es&tbb=1&ie=utf-8 and putting in a search for a service like transportation. In addition, NJ Helps has an online screening tool for possible benefits and links to online applications for things like food assistance, heating help, etc. at www.njhelps.org/ or Spanish www.mynjhelps.com/.
Family leave also helps families stay financially stable while caring for their ill member. The National Family Medical Leave Act is a federal law that provides up to 12 weeks of unpaid leave and information is available at www.dol.gov/whd/fmla/index.htm. NJ was one of the first states to pass a law providing paid family leave for up to 6 weeks and information is available at http://lwd.state.nj.us/labor/fli/fliindex.html (for Spanish click on “language” top of page.) Financial planning can also include things like special needs trusts so that the individual won’t lose eligibility for future benefits.
Lastly, parents want to ensure that their child is as independent as possible as an adult, regardless of disability. There are Centers for Independent Living that help students and self-advocates
SPAN Health Advocacy Across the Lifespan Manual Page 17 gain life skills, postsecondary education, and employment. You can find your local CIL at www.njsilc.org/. Vocational rehabilitation services can also help youth and young adults with disabilities gain skills for competitive employment. (Please also see the section on Transition.)
Other resources to help families with finances are:
Financial toolkit - Caregiver Action Network http://nfca.typepad.com/financial_planning
Healthcare Financing- Family-to-Family Georgia (Parent-to-Parent Georgia) http://p2pga.org/images/stories/CMS_P2P_Health_care_Financing_Fact_sheet_ October_8_2012.pdf
Help for the Costs of Raising a Child with Special Needs-Exceptional Parent magazine www.spanadvocacy.org/content/help-costs-raising-child-special-needs
Possibilities: A Financial Resource Book for Parents of Children with Disabilities-PACER Center www.pacer.org/publications/possibilities/images/stories/contentpdfs/possibilities_ full_site/possibilities_full.pdf
Financial Issues re: Insurance Plans/Appeals
Closely related to financial burden is getting the most out of insurance coverage. Another of the MCHB core outcomes is “families of CSHCN [Children with Special Health Care Needs] have adequate private and/or public insurance to pay for the services they need.” Families need to know that they can use the “disabled dependent” provision to continue insurance coverage for their child even past age 26 under the ACA (and age 31 under NJ law), as long as the parent stays employed by the same company. Children may be eligible for Medicaid, or if denied due to family income, families and self-advocates can reapply at age 18 as a “family of one.” Also, children could be eligible for Medicare early due to kidney disease or if their parent becomes disabled or dies. For more information, see the section on the Affordable Care Act. Most families don’t know that they can “appeal” if a claim is denied. They don’t have to take “no” for an answer and even though only 1/3 of families appeal, half of the families that do appeal have the decision reversed in their favor. Each type of insurance has their own process and timeline for appeals, so families need to check their member handbook, but often a doctor’s note of medical necessity is all that is needed. A good starting point is “Defining Medical Necessity” found at
SPAN Health Advocacy Across the Lifespan Manual Page 18 www.jhsph.edu/research/centers-and-institutes/womens-and-childrens-health-policy- center/publications/cshcn-MedicalNecessity.pdf. Families should also send everything certified/return receipt and keep copies. The NJ Department of Banking and Insurance has an appeal guide at www.state.nj.us/dobi/division_consumers/insurance/appealcomplaintguide.pdf.
For families of individuals with developmental disabilities, the publication “Maximizing Coverage Under NJ’s Autism and Other Developmental Disabilities Insurance Mandate” at www.spannj.org/cyshcn/core_outcome_3/Maximizing%20Coverage%20ASD%20&%20Other %20DD.pdf is very helpful. For people needing special dietary items not covered by insurance like food thickeners, caloric supplements, etc. sometimes a company will give a 50% discount if you order from them directly. Families can check with Special Child Health Services in their county for help funding these items at www.state.nj.us/health/fhs/sch/sccase.shtml. For families of individuals with mental health issues, federal and state mental health “parity” (equal coverage for physical and mental illness) will help children get the most benefits. (See also the sections on the Affordable Care Act as well as Mental Health.)
If families are fortunate enough to have multiple insurance plans, whether it’s the parents’ coverage or a public/private combination, “coordination of benefits” will help get the best coverage. This means that the primary plan pays first and then the other insurance plan covers all or most of the rest. However, families may need to let providers know to rebill. If families use Medicaid to supplement a private insurance plan, even if the doctor/medical provider doesn’t usually accept Medicaid, the billing department can call the Medicaid HMO for the directions on how bill Medicaid as “out of network.” If a provider doesn’t take Medicare, the provider just needs to send his “Medicare opt out” with the bill using this Photo blog.equifax.com Medicare form in English or Spanish at www.cms.gov/Medicare/CMS-Forms/CMS- Forms/CMS-Forms-Items/CMS012949.html. The NJ Department of Human Services has an excellent guide, “When You Have Medicaid and Other Insurance,” available at www.state.nj.us/humanservices/dmahs/home/Medicaid_TPL_Coverage_Guide.pdf.
Other resources to help families with insurance issues are:
Health Insurance Rights – Family Voices/ Family-to-Family Tennessee (Tennessee Disability Coalition) http://www.tndisability.org/tndisability/childrens- health-care
Help for Families with Health Insurance Issues - Family Matters-Family Voices national
http://www.thefamilymatterswebsite.org/PDF/GuideDealingwithInsuranceCo.pdf
Things to Consider When Evaluating a Health Insurance Plan-Family Voices/ Family-to-Family Alabama
SPAN Health Advocacy Across the Lifespan Manual Page 19 http://www.familyvoicesal.org/documents/ThingstoConsiderwhenevaluatingaheal thplanTipSheet.pdf
Understanding Your Health Care Insurance and Appeal Rights - Hinkle, Fingles, & Prior Law Firm http://www.hinkle1.com/pdf/health_care_rights.pdf
Children’s Specialized Hospital-Health Insurance Education http://www.childrens-specialized.org/insurance-education
Health Information Privacy The use of Health Information Technology (HIT) has many benefits, Photo www.bocatc.org such as avoiding duplicative forms/tests, sharing information between providers, making appointments online, e-prescribing, and preventing medical errors. Families need to know that they can “opt out” of information sharing but that this may have consequences, such as not being able to access information in an emergency when the patient can’t communicate. There are protections in place to prevent unauthorized access to the private health information of individuals. The Health Insurance Portability and Accountability Act (HIPAA) protects health records and can be found at http://www.dlc-ma.org/Resources/Health/HEA %2013%20HIPAA_healthrecords_HHS.pdf. The Office of Civil Rights has a publication, “Your Health Information Privacy Rights,” at www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/consumer_rights.pdf or in Spanish, www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/privacy-rights-20130204- spn.pdf. Most recently, Healthcare.gov posted tips on preventing fraud at www.healthcare.gov/how-can-i-protect-myself-from-fraud-in-the-health-insurance-marketplace/.
Hearing
Hearing, dental (see above), and vision care (also see section on Vision) are an important component of overall health for growing children. Unfortunately, sometimes hearing issues aren’t discovered quickly and can even be misinterpreted as behavioral, affecting speech and academic development. Newborn screening, including hearing screening, helps with early diagnosis. NJ has the Early Hearing Detection & Intervention program and information for families is at www.state.nj.us/health/fhs/ehdi/parentinfo.shtml. In the event that hearing loss is confirmed, the U.S. Department of Education as an excellent publication “Opening Doors: Technology and Communication Options for Children with Hearing Loss” at
SPAN Health Advocacy Across the Lifespan Manual Page 20 Photo www.gahcd.org www2.ed.gov/about/offices/list/osers/products/opening_doors/index.html or Spanish www2.ed.gov/about/offices/list/osers/products/opening_doors/espanol.html. There is also “Just in Time: Hearing-Related Resources for Families” at www.infanthearing.org/familysupport/just-in-time-color.pdf. Parents can decide what works best for their child using technology such as cochlear implants, sign language, lip-reading etc. Much like those with learning disabilities see LD as a “learning difference” (i.e., the student can still learn although differently), the deaf community views deafness as a difference rather than a disability. Early diagnosis and treatment will result in the best outcomes such as speech and facilitate inclusion in the community.
Hospitalization
Families of individuals with disabilities may need to be prepared for hospital stays, either through planned procedures or through the emergency room. Families who have a member with life-threatening illness should be trained in First Aid/CPR and emergency medication administration, sometimes known as “rescue meds” and to have them wherever the individual goes. Families need to know how to care for the individual upon discharge from the hospital, when to call the doctor, and how to tell if it’s an emergency that requires a call to 911. Family members may also need to monitor the individual at night, even while asleep, and there are video/audio monitors as well as motion detectors that are sensitive enough to hear breathing. Please also see the section Emergencies-Emergency Care for more information.
Photo www.boston.com
There is information on preparing for a hospital stay, even if it is unplanned, such as having some items pre-packed and lists to organize what is needed, at www.spannj.org/familywrap/SPAN-hospital_visit_factsheet-revised.pdf. There are also resources for when your child is already in the hospital from the Caregiver Action Network (“When Your Loved One Is Hospitalized”) at http://caregiveraction.org/_doc/pdf/WhenHospitalized.pdf. Guidelines for a Hospital Stay from the National Transition of Care Coalition are found at www.ntocc.org/portals/0/hospital_guide.pdf. There is also information on the transition “Hospital to Home” from Families Together at http://familiestogetherinc.org/wp-
SPAN Health Advocacy Across the Lifespan Manual Page 21 content/uploads/2011/07/Hosptial_to_Home_Final_July_2011.pdf or Spanish http://familiestogetherinc.org/wp-content/uploads/2011/07/Hospital-to-Home-Spanish-1.pdf as well as “Surviving a Hospital Stay…and After” at www.spannj.org/familywrap/SPAN- hospital_stay-preparing_to_go_home-revised.pdf.
Life Threatening Illness-Supports for Families
Parents of children with life-threatening illness need even more support (please also see the sections on Hospitalization and Emergencies). Families will need to be trained in CPR and First Aid. They also need to know when to call 911. Parents can find CPR and First Aid classes from the American Heart Association at
www.heart.org/HEARTORG/CPRAndECC/FindaCourse/Find-a- Course_UCM_303220_SubHomePage.jsp. They can also find classes from the American Red Cross at www.redcross.org/take-a-class or Spanish http://www.redcross.org/cruz-roja/cursos. Families can also check with hospitals, fitness/wellness centers, county colleges, and Photo Chai Lifeline evening adult classes. There is another organization called Chai Lifeline whose motto is “Fighting Illness with Love.” Their resources include housing and meal support (kosher, too), for the entire family during hospitalization and can be found at www.chailifeline.org. Lastly information on end-of-life care, called hospice care, can be found from WebMD at www.webmd.com/balance/tc/hospice-care-topic-overview, as well as the National Hospice and Palliative Care Organization at www.nhpco.org/about/hospice-care.
Managed Care Managed care is intended to be a system of health care delivery and financing which coordinates and provides timely access to high-quality, medically-necessary health care services for its members in a cost-effective manner. When it works well, managed care can provide a comprehensive approach to providing and paying for quality medically needed services through either public or private insurance. According to the Boggs Center, the “Hallmarks of Managed Care” are:
1. Using specific providers (in the insurance company network)
2. Not relying on the emergency room for primary care services
SPAN Health Advocacy Across the Lifespan Manual Page 22 3. Authorizing of specialty care and referrals (a primary care physician such as a pediatrician or family practitioner would do this)
Source: Boggs Center
A very important component of managed care is care management. This is mandated by NJ Medicaid for all children with special health care needs and also available in most private insurance plans. In Medicaid, the HMO will assign the child to a care manager. Under NJ Medicaid the care manager is usually a nurse or social worker who is responsible to help coordinate the child’s care and is the first person to contact with a question or concern about the child’s health coverage. Families should request a care manager if they are not automatically assigned one.
Another important piece of managed care is for families to use emergency rooms only for emergencies. Families can use the “prudent layperson” definition, which means if they as a non- medical layperson think that the individual needs emergency care, then they can go to the E.R. Other resources include:
Your Guide for Making Managed Care Work for You – AUCD www.aucd.org/docs/urc/TA%20Institute %202013/MedicaidManagedCareEnglishfinal2011.pdf
Parents Partnering with Managed Care Plans - Family Voices national http://www.familyvoices.org/admin/work_leadership/files/ParentsPartnering.pdf
Medicaid Managed Care Supplement (hard copy only) - Community Health Law Project http://www.chlp.org/publications
To Your Health (hard copy only) - Community Health Law Project NJ http://www.chlp.org/publications
SPAN Health Advocacy Across the Lifespan Manual Page 23 SPAN Health Advocacy Across the Lifespan Manual Page 24 Medicaid Medicaid is a joint federal-state program which pays for health care services for low income families with dependent children, senior citizens, and people with disabilities, as well as some people who are medically needy because their health expenses are high. Most of Medicaid in NJ is now Medicaid managed care (see section on Managed Care). The Boggs Center’s “Your Guide for Making Medicaid Managed Care Work for You” can be found at http://rwjms.rutgers.edu/boggscenter/products/documents/MedicaidManage Photo www.yalescientific.org dCareEnglishfinal2011.pdf or http://rwjms.rutgers.edu/boggscenter/products/documents/Medicaidmanagedcarespanishfinal2011.pdf.
An important part of Medicaid for children is EPSDT (Early Periodic Screening Diagnosis & Treatment) http://mchb.hrsa.gov/epsdt/overview.html. The Maternal and Child Health Bureau defines it as:
Early Identifying problems early, starting at birth Periodic Checking children's health at periodic, age-appropriate intervals Screening Doing physical, mental, developmental, dental, hearing, vision, and other screening tests to detect potential problems Diagnosis Performing diagnostic tests to follow up when a risk is identified, and Treatment Treating the problems found.
Despite the stigma sometimes associated with Medicaid, EPSDT has better coverage for children than most employer health plans.
In NJ, Medicaid and SCHIP (State Children’s Health Insurance Program) are together. Information on Medicaid/SCHIP can be found under the Family Care Program. Various resources for New Jersey Family Care include:
NJ FamilyCare factsheet- who is eligible/what is covered (bilingual) www.njfamilycare.org/docs/facts_english.pdf
Healthy Facts at a Glance http://www.njfamilycare.org/docs/healthy_facts_english.pdf or Spanish http://www.njfamilycare.org/docs/healthy_facts_spanish.pdf
Important News: Will Using Benefits Hurt my Changes of Getting a Green Card or Becoming a U.S. Citizen? http://www.njfamilycare.org/docs/flyer_english.pdf or Spanish http://www.njfamilycare.org/docs/flyer_spanish.pdf
General information on Medicaid and how it works can be found at www.spannj.org/familywrap/medicaid_fact_sheets.htm or Spanish www.spannj.org/publications/index.html#espanol. The Arc of NJ also has regular Medicaid
SPAN Health Advocacy Across the Lifespan Manual Page 25 updates on their program Mainstreaming Medical Care at www.arcnj.org/programs/mainstreaming_medical.html as well as their excellent newsletter Healthy Times at www.arcnj.org/information/publications.html/title/healthy-times-.
Some families have had difficulties with the “Disabled Adult Child (DAC)” provision affecting Medicaid eligibility. This means that if the child had SSI before but the parent becomes disabled, retires, or dies, the child is a DAC and should maintain Medicaid eligibility. There are two good publications available from the NJ Department of Human Services on this topic at www.state.nj.us/humanservices/ddd/documents/Documents%20for %20Web/DisabledAdultChildren(DAC).pdf and www.state.nj.us/humanservices/dmahs/info/resources/medicaid/2013/13- 03_Continued_Eligiblity_For_Disabled_Adult_Children_DAC.pdf.
Families can ask questions about their Medicaid benefits from their HMO member services or care manager. NJ also has a Medicaid hotline at (800) 356-1561. If families still have concerns, they can contact Medical Assistance Customer Centers in their county found at www.state.nj.us/humanservices/dmahs/info/resources/macc/. The Kaiser Family Foundation has “A Guide to the Medicaid Appeals Process” at http://kaiserfamilyfoundation.files.wordpress.com/2013/01/8287.pdf. If families haven’t been able to resolve the issue using this process, they can fill out the Medicaid problem reporting form found at www.spannj.org/medicalproblemreportingform.htm. The last resort is a Medicaid fair hearing and there is a guide explaining the process from Family Connection, which, although not NJ specific, gives tips on how to prepare at http://pandasc.org/wp- content/uploads/2012/01/Medicaid-Fair-Hearing.pdf
New developments in NJ Medicaid include the Comprehensive Medicaid Waiver and information is available on forthcoming changes at www.state.nj.us/humanservices/dmahs/home/waiver.html. Please note that effective 7/1/14, all Medicaid waivers transitioned to Medicaid Managed Long Term Services and Supports found at www.state.nj.us/humanservices/dmahs/home/mltss.html. See also SPAN’s factsheet at www.spanadvocacy.org/content/nj-medicaid-waivers-transition-managed-care-effective-7114.
Medicare (dual eligibles) Photo www.Medicare.gov In some circumstances, individuals with special health care needs may also be eligible for Medicare, such as for dialysis or kidney transplant. When some children with disabilities become adults, they may become dually eligible for both Medicaid and Medicare. The Social Security Administration has a booklet “Benefits for Children with Disabilities www.ssa.gov/pubs/index.html.” A good resource for families who have questions on Medicare
SPAN Health Advocacy Across the Lifespan Manual Page 26 is the State Health Insurance Program counselors at www.state.nj.us/humanservices/doas/home/sashipsite.html.
SPAN Health Advocacy Across the Lifespan Manual Page 27 Prescriptions/Medication Management/Financial Help
One of the main causes of treatment failure resulting in hospitalization for both physical and mental health is medication error. Families may be told to increase or reduce the dosage of a medication they already have on-hand, or to use a pill splitter. This may cause confusion because it is different from what was on the bottle. Or the next time they pick up the medication, it might look different because it is a generic instead of a brand name version. Each time they get a new medication, families should ask if it will have a bad reaction when taken with any of the individual’s current medications. Families may even need to get medications from a specialty pharmacy—sometimes called compounding pharmacy because a special mixture is needed to create the medicine—though sometimes the hospital can give the formula directly to a local pharmacy. Other times families may encounter issues if they are getting care across state lines. In this case, even if they have an out-of-state authorization for medical care, they may need to pay for medications up front and get reimbursed when they get home. Or they may have to get a prescription or approval for use of home medication while in-patient if the family member is hospitalized and the hospital doesn’t carry the medication in their “formulary” (list of drugs), though some hospitals have pharmacies like CVS on the same campus in addition to their “in- house” pharmacy.
Organizing medicine will help avoid giving the wrong dose or at the wrong time or missing a dose. A good free tool is MyMedSchedule at www.mymedschedule.com, which has a medication schedule, what each one looks like, its use, and a checklist for filling the pill box. FDA has a form called My Medicine Record at www.fda.gov/downloads/AboutFDA/ReportsManualsForms/Forms/UCM095018.pdf. Family Voices/ Family-to-Family New Hampshire has a publication “Medical Prescription Tips” at www.fv-ncfpp.org/files/5813/0593/6859/Prescip_Tips.pdf. Please also see the diagram below on how to read a prescription bottle label.
Photo www.merckengage.com
The challenge of paying for medications sometimes causes families to either skip doses or even take a medicine from another family member, which can cause even more health problems. The first thing families can do is make sure their insurance covers what it should and that both prescription plans are billed (if there is more than one plan). There are organizations that help
SPAN Health Advocacy Across the Lifespan Manual Page 28 pay for medicine, especially for those without insurance. The Partnership for Prescription Assistance will help families get free or low cost medicine and information is available at www.pparx.org/en/prescription_assistance_programs or Spanish www.pparx.org/es/prescription_assistance_programs_es. Pfizer Helpful Answers has a similar program and does not limit families to only use Pfizer-brand prescriptions. The program can be found at www.phahelps.com/pages/Find/FindAll.aspx or Spanish www.phahelps.com/pages/Find/FindAll_s.aspx. Supplemental Security Income & Social Security Disability Insurance
Photo www.ssa.gov
According to the Social Security Administration (SSA), “Supplemental Security Income (SSI) program pays benefits to disabled adults and children who have limited income and resources.” The SSA has a booklet on this and other benefits at http://www.ssa.gov/pubs/index.html in English/Spanish (see Benefits for Children with Disabilities.) It is important to note that if the child isn’t eligible for SSI due to family income, at age 18 s/he can reapply as a “family of one.” In many states, SSI and Medicaid (see also Medicaid section) are linked. Social Security Disability Insurance (SSDI) SSDI “pays benefits to you and certain members of your family if you are ‘insured,’ meaning that you worked long enough and paid Social Security taxes.” Children may get benefits if their parent becomes disabled. Young adults with disabilities who have worked may be eligible for benefits under their own record. For more information see http://www.ssa.gov/dibplan/index.htm or SPAN’s Healthcare Financing Fact Sheet series at www.spanadvocacy.org/content/health-care-financing-factsheets-english and www.spanadvocacy.org/content/healthcare-financing-factsheets-spanish.
Title V Photo www.mchb.hrsa.gov
SPAN Health Advocacy Across the Lifespan Manual Page 29 According to the Maternal & Child Health Bureau, Title V is a “Federal-State partnership” that “acknowledges the uniqueness of each State and…maternal and child health program and the differing needs of their individual populations.” NJ has county “case management units” that provide families of children 0-21 find health resources and discounted medical supplies, as well as assist with early intervention, Medicaid, SSI, and the Catastrophic Illness Relief Program application, including home modification (see section on Financial Help.) They link families to charitable organizations that do fund raisers for items like medical equipment (leg braces, wheelchairs, etc.). Families can find help in their county at http://www.state.nj.us/health/fhs/sch/sccase.shtml. Family Voices national has a booklet for families at http://www.familyvoices.org/work/title_v under “Title V Information System.” In NJ, Special Child Health Services county case management units are found at http://www.state.nj.us/health/fhs/sch/sccase.shtml.
Transition (healthcare) Photo www.fvkasa.org Transition to adult life for children with special needs is more than “school to work.” A big part of the transition is changing to adult healthcare. A core Maternal & Child Health Bureau outcome is “Youth with special health care needs receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.” But transition to adult life needs to start when children are young and be reinforced throughout their lives. This can be done by beginning to give the child choices and some control, even for something as simple as what to wear on a daily basis. When the child has limited choice – for example, medical procedures like lab work –the child can choose something simple, like which arm to use. Children need to learn to advocate for themselves to maximize their independence. Families should try not to do everything for their child with special needs, but also recognize the child may need more time to do things themselves. Even if the child may not be completely independent as an adult, families can help ensure that their child can reach their personal best potential, whatever that may be. Resources to help with health care transition include: By Age Being a Healthy Adult: How to Advocate for Your Health and Health Care- Boggs Center http://rwjms.rutgers.edu/boggscenter/products/documents/TransitiontoAdultHealt hcare-EN-complete.pdf or Spanish http://rwjms.rutgers.edu/boggscenter/products/documents/TransitiontoAdultHealt hcare-SP-complete.pdf
Going from Tween 2 Teen: It’s Time to Be More in Charge of Your Health (ages 12-14) –http://here.doh.wa.gov/materials/tween-2-teen/13_CSHCN- 12yr_E14L.pdf Your Life, Your Health, Your Way: It’s Time to Be More in Charge of Your Health (ages 15-17) http://here.doh.wa.gov/materials/life-health- way/13_CSHCN-15yr_E14L.pdf
SPAN Health Advocacy Across the Lifespan Manual Page 30 Your Future, Your Life (young adults) http://here.doh.wa.gov/materials/transition-plan-young-adults/13_CSHCN- 18yr_E14L.pdf Planning for a Healthy Transition: A Family Transition Plan – Washington Department of Health http://here.doh.wa.gov/materials/healthy-transition- plan/13_CSHCN-parent_E14L.pdf
Transition Resources: Health -Kentucky Cabinet for Health & Family Services ages 12-14 http://chfs.ky.gov/ccshcn/transition12-14.htm ages 15-17 http://chfs.ky.gov/ccshcn/transition15-17.htm ages 18-21 http://chfs.ky.gov/ccshcn/transition18-21.htm
For Youth
Transition to Adult Life On-Line Resource Guide-Champions for Progress www.spannj.org/transition/TransitionCD/
Transition Tip Sheets for Teens - Statewide Parent Advocacy Network www.spannj.org/Family2Family/Healthcare_Transition_for_Teens_with_Special _Needs.pdf or Spanish www.spannj.org/Family2Family/Healthcare_Transition_Summary_for_Teens_Spanish.pdf
Healthcare Transition Resources for Youth & Families-Got Transition? www.gottransition.org/youthfamilies/index.cfm
For Families
Transition Checklist for Parents - American Academy of Pediatrics (Illinois) www.spanadvocacy.org/sites/g/files/g524681/f/files/CaregiverChecklist_RE_0.pd f
Healthcare Transition Resources-Got Transition www.gottransition.org/resources/index.cfm
For Professionals
Transition Resources for Health Practitioners – Champions for Progress www.spanadvocacy.org/sites/g/files/g524681/f/files/Transition%20Resources %20for%20Health%20Practitioners_0.pdf
Resources related to work, post-secondary education, and independence can be found at Healthy & Ready to Work For Youth By Youth, www.syntiro.org/hrtw/youth/group_etc.html. There is also a website on college, including accommodations, at Think College-College Options for People with Intellectual Disabilities, www.thinkcollege.net/. There are work incentive programs which allow people with disabilities to maintain their eligibility for benefits like Medicaid and SSI. The NJ Workability Program describes how to maintain Medicaid eligibility and Discoverability (transportation) and can be found at
SPAN Health Advocacy Across the Lifespan Manual Page 31 www.state.nj.us/humanservices/dds/projects/discoverability/. The Family Resource Network has information on NJ Work Incentive Network Support at www.njwins.org/.
There are also general transition resources with good overviews of the entire process at:
Student Transition workbook-Statewide Parent Advocacy Network www.spannj.org/pti/Workbook_English.pdf
Transition Toolkit Tab 2 Transition Planning – Colorado Department of Education www.cde.state.co.us/sites/default/files/documents/cdesped/download/pdf/tk_trans plan.pdf
Transition Toolkit-Health - Autism Speaks (good for all disabilities) www.autismspeaks.org/sites/default/files/documents/transition/health.pdf
Family Voices national has Kids as Self Advocates (KASA), which is run by youth, at http://fvkasa.org/resources/health.php or Spanish http://fvkasa.org/espanol.php. Centers for Independent Living (CILs) help people with disabilities with activities of daily living and independent living skills www.njsilc.org/. Area Agencies on Aging have now formed Aging and Disability Resource Centers found in each county at www.state.nj.us/humanservices/doas/home/saaaa.html. Medical Systems
Medical Appointments
Photo www.friendshipcircle.org Families need to be organized to make the most out of doctor’s appointments. There are many resources available to address issues such as preparing questions for doctors, coordinating specialists to avoid multiple visits, and efficient use time with providers in the managed care system. One of the most important things for families to know is what their child should be doing at a certain age. Bright Futures has “encounter forms” by age for families at www.brightfutures.org/encounter/family/. Another good resource is Handling Medical Appointments from Family Voices/ Family-to-Family New Hampshire at http://nhfv.org/publication/tips-on-handling-medical-appointments/. Family Voices Wisconsin has “Making the Most of Doctor’s Appointments” with tips on what do to before, during, and
SPAN Health Advocacy Across the Lifespan Manual Page 32 after the appointment at http://fvofwi.org/wp-content/uploads/2012/01/Right-Doctor-fact-sheet- new1.pdf. Families can find tips on preparing their child in the publication “Prepare Your Child for Doctor Visit” from Parents Reaching Out at http://parentsreachingout.org/cd/pdfs_en/hc003.pdf or Spanish http://parentsreachingout.org/cd/pdfs_es/hc003_es.pdf. Another issue facing families is special needs transportation. Families can find information on what is available and how to address transportation concerns from the NJ Council on Special Transportation at www.njcost.com/ or their local Center for Independent Living found at www.njsilc.org. By having everything ready ahead of time, families and their family member with special needs will get the best experience during their medical visit.
Medical Decision-Making
Photo www.aboutkidshealth.ca Shared decision-making is one of the key concepts in healthcare. When patients partner with their health providers, they get better outcomes. This is one of the key core outcomes of the Maternal & Child Health Bureau, which states, “Families of children and youth with special health care needs partner in decision making at all levels and are satisfied with the services they receive.” One of the main ideas behind the medical home concept (see section on Medical Home also) is that care needs to be patient and family centered. Children with special needs should have as much input as they can based on age and ability (see also section on Transition.) Parents need to decide if and when their children are capable of making medical decisions. The individual with disabilities should maximize their independence, including medical decisions. One of the most difficult decisions for parents of children with special needs is deciding how much they need to be involved in medical decisions as their child grows older. Besides guardianship (which could also be limited), there are other tools such as power of attorney that parents can use. Alternatives to guardianship resources can be found at: Alternatives to Guardianship http://ruralinstitute.umt.edu/images/archived_publications/Alternatives_To_Guar dianship.pdf
Guardianship-Family Options (see Power of Attorney) http://nj.gov/humanservices/ddd/services/guardianship/
Guardianship & Alternatives to Guardianship www.ridlc.org/publications/RIDLC_Guardianship_Booklet.pdf
Guardianship and its Alternatives – (see Chapter 3)
SPAN Health Advocacy Across the Lifespan Manual Page 33 http://mcdd.kennedykrieger.org/guardianship-and-its-alternatives-handbook- 2011.pdf
Thinking About Guardianship? www.gcdd.org/images/Reports/guardianship %20guide%20-%20gcdd.pdf
There is information on Palliative and End of Life Care: What is an Advance Directive (see Healthcare Proxy) available at www.state.nj.us/health/advancedirective/whatis.shtml from the NJ Department of Health. Lastly, but perhaps most importantly, there is a guide for self- advocates “Self Advocacy Guide to Guardianship” (see chapter 2) from the Idaho Disability Rights available at www.disabilityrightsidaho.org/images/content/docs/Self-Advocacy%20Guide %20to%20Guardianships.pdf. Medical Home The medical home isn’t a physical place but the concept of having all of a person’s medical care information together and having a primary care provider coordinate all needed care, including primary care and specialty care. This is especially important for individuals with complex needs. The Primary Care Physician (PCP) has comprehensive information on the child’s conditions and helps care run smoothly across different settings and using specialists. The medical home care is family-centered, continuous, comprehensive, coordinated, compassionate, and culturally competent. Family-centered care acknowledges that families are the primary caregiver and support for individuals with special needs. Care is continuous when there is the same PCP over time and there is also help with transition to adult care. Comprehensive care covers both sick and well care such as immunizations. Care is coordinated when families are given community-based resources. Photo www.fmstudented.org Another of the six core outcomes for the MCHB is “Children and youth with special health care needs receive coordinated ongoing comprehensive care within a medical home.” Compassionate care means that concern for well-being of both the individual and family is demonstrated by providers. Culturally competent care respects the diversity of families served (see also section on Cultural Competence.) There are resources to help families understand and use the medical home concept (see section on Medical Records for care plans).
General information on medical home:
Every Child Deserves a Medical Home www.spannj.org/Family2Family/medicalhomeflyer.pdf
Medical Home www.pacer.org/health/medicalhome.asp
SPAN Health Advocacy Across the Lifespan Manual Page 34 Medical Home-Not Just a Place www.gucchdgeorgetown.net/ucedd/documents/MedicalHome.pdf or Spanish www.gucchdgeorgetown.net/ucedd/documents/3_spanish.pdf
Medical Home Fact Sheet - Family-to-Family Georgia (Parent-to-Parent of Georgia) http://p2pga.org/images/stories/P2P_CMS_Medical_Home_Fact_Sheet_October_ 8_2012.pdf
Your Medical Home http://www.spannj.org/cyshcn/medical_home/MedicalHomeFamilyBrochure.pdf or Spanish
www.spannj.org/cyshcn/core_outcome_2/MedicalHomeFamilyBrochureEspanol.pdf
Family-Centered Care
Family-Centered Care Self-Assessment Tool www.familyvoices.org/admin/work_family_centered/files/fcca_FamilyTool.pdf
Families Partnering with Providers
Building a Partnership with Your Child’s Doctor www.gucchdgeorgetown.net/ucedd/documents/BuildingPartnership.pdf or Spanish www.gucchdgeorgetown.net/ucedd/documents/4_spanish.pdf
Healthcare Checklist (picking providers, preparing for appointments) www.spanadvocacy.org/sites/g/files/g524681/f/files/Healthcare_Checklist_0.pdf
Partnering with Your Child’s Provider www.familyvoices.org/admin/work_caring/files/partnering_providers.pdf
Partnering with Your Doctor www.ncdhhs.gov/dph/wch/doc/providers/Partnering_with_Your_Doctor- A_Medical_Home_Guide.pdf
Medical Records Photo www.nymetroparents.com Closely related to the medical home (see also Medical Home section) is the use of medical records to keep track of care. Besides records kept by medical professionals, families can also
SPAN Health Advocacy Across the Lifespan Manual Page 35 keep track of the most important information regarding their family member. Individuals with special needs could wear medical ID bracelets and families can carry a sheet in their wallet with essential information such as conditions, doctor contact information, medications/allergies etc. There is also a movement towards electronic medical records, including medical id bracelets that connect to computers. Either way, families can decide what works best for them. A good starting point would be to look at the Universal Child Health Record at www.state.nj.us/health/forms/ch-14.pdf as well as the Care Plan for Children with Special Health Care Needs at www.state.nj.us/health/forms/ch-15.pdf. These forms simplify the child’s basic medical information. The American Academy of Pediatrics also has “Build Your Own Care Notebook” for families at www.medicalhomeinfo.org/for_families/care_notebook/care_notebook.aspx. This detailed notebook has information on providers, insurance, appointments, hospitalization, immunizations, medical bills, etc. Other good resources are:
Care Notebook -Exceptional Children’s Assistance Center http://ecac-parentcenter.org/userfiles/F2F/Care%20Notebook%20FINAL%20ss %2012.1.09.pdf or Spanish http://ecac- parentcenter.org/userfiles/F2F/Care_Notebook_Spanish_Final_3-1- 11.pdf
Care Notebook - Washington Department of Health www.pluk.org/Pubs/CareNotebook_790k.pdf
Care Plans for Teens http://cshcn.org/planning-record-keeping/care-plans-teens
Teen Care Notebook http://cshcn.org/planning-record-keeping/teen-care-notebook
My Health Pocket Guide (for self-advocates) www.waisman.wisc.edu/cedd/pdfs/products/health/PG.pdf
It’s also important for families to be aware of their rights – and their children’s rights – to privacy and confidentiality regarding their medical records under HIPAA. Mental Health
Mental Health is just as important as physical health. In recognition of this fact, the Affordable Care Act strengthened access to mental health services. One of the ten Essential Health Benefits under the ACA is coverage for “mental health and substance use disorder services, including
SPAN Health Advocacy Across the Lifespan Manual Page 36 behavioral health treatment.” Increased access to behavioral health treatment may also make it easier to get coverage for autism. Although NJ has an “autism and other developmental disabilities” mandate, it only applied to 25% of plans which were subject to state regulations. Federal mental health parity means that mental health treatment must be equal to that for physical health. However, NJ already had mental health parity that was even stronger than the federal law.
In dealing with mental health, families must try to avoid the stigma associated with mental illness. The National Alliance on Mental Illness (NAMI) likens it to any other biologically- based illness except the organ affected just happens to be the brain, and the symptoms manifest as behavior. Just as no one would blame someone with diabetes who needed insulin, the same should be true for those who need treatment for mental illness. Although the recent displays of school violence have opened the dialogue on mental illness, research indicates that people with mental health issues are more like to be victims, rather than perpetrators, of violence. NAMI also has workshops and classes for families dealing with mental illness at www.naminj.org/programs/children-info-services/nami-basics/ or Spanish contact Martha Silva at (888) 803-3413 or [email protected]. Nationally NAMI has additional resources from their Child & Adolescent Action Center at www.nami.org/Template.cfm? Section=For_Parents,_Caregivers,_and_Youth&Template=/ContentManagement/ContentDispla y.cfm&ContentID=37809 or Spanish www.nami.org/Template.cfm? Section=Child_and_Adolescent_Action_Center&template=/ContentManagement/ContentDispla y.cfm&ContentID=21090. They also have a family guide on how the primary care provider (e.g. pediatrician) can address mental health at www.nami.org/Content/ContentGroups/CAAC/FG- Integrating.pdf. In NJ, there are also Family Support Organizations in each county have information and support for parents at http://njfamilyalliance.org/ or for Spanish just click on translate. There is also the Children’s System of Care and an overview of services, including emergency mobile response, which will go to where the child is located for crisis stabilization is available at www.nj.gov/dcf/about/divisions/dcsc/. Performcare, the Contracted System Administrator (gatekeeper) of the Children’s System of Care, has a “Youth & Family Guide” at www.performcarenj.org/pdf/provider/youth-family-guide-eng.pdf or Spanish www.performcarenj.org/pdf/provider/youth-family-guide-span.pdf.
Other good resources for families on what to look for and when to seek help:
Young Children
Center on the Social and Emotional Foundations for Early Learning-Family Tools http://csefel.vanderbilt.edu/resources/family.html
First Steps: A guide for Parents of Young Children with Developmental Disabilities Chapters 1-4 (diagnosis based on age, parent feelings, definition of developmental disabilities, individual/family adjustment) English www.fddc.org/sites/default/files/file/publications/first_steps/FSSTEPSEngColor01- 05.pdf
SPAN Health Advocacy Across the Lifespan Manual Page 37 Spanish www.fddc.org/sites/default/files/file/publications/first_steps/FSSTEPSSpaColor01- 05.pdf
All ages
A Family Guide to Children’s Mental Health Services and Supports - Florida Department of Children and Families www.dcf.state.fl.us/programs/samh/mentalhealth/docs/FamilyGuideBookDCF.pdf
Bright Futures in Practice (what to expect by age) www.brightfutures.org/mentalhealth/pdf/tools.html
Emotional, Behavioral, and Mental Health Challenges in Children and Adolescents- Maternal/Child Health Knowledge Path - U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal/Child Health Bureau www.mchlibrary.org/KnowledgePaths/kp_Mental_Conditions.html
Family Guide to Systems of Care for Children with Mental Health Needs - English & Spanish http://store.samhsa.gov/product/Family-Guide-to-Systems-of-Care-for-Children-With- Mental-Health-Needs-bilingual-English-Spanish-/SMA05-4054
Families of individuals with disabilities need to recognize when their family member, or even other family members, need some support to address mental health and wellness.
Wellness & Prevention Wellness and preventive care are especially important for people with special health care needs. So often, the focus is on the person’s condition that typical measures such as lead screening, immunizations, etc. could be forgotten. The Affordable Care Act has a prevention and wellness initiative which means that these services are provided to families at no cost. Nutrition
According to the Centers for Disease Control (CDC), 18% of children and 21% of teens are obese (not just overweight.) Obesity causes children to develop “adult” diseases like diabetes, high blood pressure, high cholesterol etc. The two most important factors in reducing obesity are nutrition and activity (see also section on Physical Activity.) The CDC has good information on nutrition for children at www.cdc.gov/bam/nutrition/index.html or similar information in Spanish at www.cdc.gov/spanish/especialesCDC/ObesidadNinos/ .
Wellness guidelines from Bright Futures have been endorsed by the Photo abilitiesexpo.com American Academy of Pediatrics (AAP). The nutrition guide is broken
SPAN Health Advocacy Across the Lifespan Manual Page 38 down by age and explains ideas such as portion control. It also addresses related topics such as breastfeeding and food allergies. The guide is available at www.brightfutures.org/nutrition/index.html. The AAP also has nutrition information for families available at www.healthychildren.org/english/healthy- living/nutrition/Pages/default.aspx or Spanish www.healthychildren.org/spanish/healthy- living/nutrition/paginas/default.aspx. This website has information on healthy snacks, food substitutions, picky eaters, gluten free diets, etc. The AAP NJ Chapter has “Obesity Prevention Resources for Parents” at www.aapnj.org/showcontent.aspx?MenuID=998 in English and Spanish. This website also has tips by age, particularly for young children. Children who are overweight or obese are more likely to grow up to be obese or overweight adults, so prevention is essential. Physical Activity Closely related to nutrition (see Nutrition section) and obesity prevention is physical activity. Physical activity is essential for good health for all people with disabilities, regardless of ability. It is even more important for children with special needs to start early as they may be more likely to have weight problems, and there are ways to make activities accessible to them. There are resources on wellness and prevention from Bright Futures, endorsed by the American Academy of Pediatrics (AAP). Bright Futures has “Bright Futures in Practice: Physical Activity” available at www.brightfutures.org/physicalactivity/about.htm. They have activities for children with and without special healthcare needs and address topics such as asthma and preventing heat stroke/exhaustion, etc. The AAP also has a fitness guide at www.healthychildren.org/english/healthy-living/fitness/Pages/default.aspx or Spanish www.healthychildren.org/spanish/healthy-living/fitness/paginas/default.aspx. This guide has ideas on making time for fitness, involving the whole family, developing a fitness plan, and overcoming obstacles such as living in unsafe neighborhoods.
The U.S. Department of Health and Human Services has a special guide on physical activities for girls at www.girlshealth.gov/fitness/index.html and www.girlshealth.gov/padres/forma_fisica/index.html (Spanish) The Centers for Disease Control & Prevention has a program “Body & Mind: Physical Activity” at www.cdc.gov/bam/activity/index.html and www.cdc.gov/spanish/hojas/actividad_fisica.html (Spanish) designed for children to use for motivation. There is also a free online course on nutrition and fitness, which is personalized to the individual called “14 Weeks to a Healthier You” from the National Center on Health, Physical Activity, and Disability at www.ncpad.org/14weeks/. The National Center on Health, Physical Activity, and Disability developed a guide “Discover Accessible Fitness” for wheelchair users that can be found at www.nchpad.org/discoverfitness/index.html. In addition to the resources above that include special needs, there are groups that work just with children with disabilities. There is a listing of accessible playgrounds at www.accessibleplayground.net/united-states/new-jersey/. Other organizations have peer buddies that mentor children and adults with special needs such as:
SPAN Health Advocacy Across the Lifespan Manual Page 39 Little League Challenger Division www.littleleague.org/media/challenger.htm Miracle League www.miracleleague.com/findaleaguestartone.html Special Olympics NJ http://www.sonj.org/
Photo www.mychildwithoutlimits.org
Sexuality
Families need to remember that individuals with disabilities have the same sexuality feelings as everyone else. Some children may need help in understanding what is happening to their bodies as they grow up. The Vanderbilt Kennedy Center has guides for both boys and girls. One is “Healthy Bodies: A Parent’s Guide on Puberty for Boys with Disabilities” and the other is “Healthy Bodies: A Parent’s Guide on Puberty for Girls with Disabilities.” The University of Minnesota has a factsheet for families “Promotion of Healthy Relationships and Sexuality for Individuals with Disabilities” at http://lend.umn.edu/docs/LEND- FACT-sexuality.pdf. The University of South Florida’s “Sexuality and Developmental Disabilities Across the Lifespan” is at http://flfcic.fmhi.usf.edu/docs/Parent_LowRes_English.pdf or Spanish http://flfcic.fmhi.usf.edu/docs/Parent_LowRes_Spanish.pdf. Dr. Peter Gerhardt, chair of the Organization for Autism Research (OAR) has good information on adult issues, including sexuality, at http://www.researchautism.org/. There are also resources with a special focus on women’s health, such as “Being a Healthy Woman” at www.health.nsw.gov.au/pubs/2010/being_healthy_woman.html. Another excellent resource is “Let’s Talk About Health” from The Arc of NJ’s Mainstreaming Medical Care Project. There is a workbook and video explaining exams available at http://mainstreamingmedicalcare.org/ and click on “Women’s Health Project” order form. www.butterflywheel.com
Vaccine Preventable Disease
Families need to make sure that their children do not get illnesses that could be prevented by vaccines. Some parents may think that because they themselves had some of these diseases as children, that it won’t hurt their children to experience the same diseases. However, even chicken pox can have serious consequences, including hospitalization and death. The American Academy of Pediatrics has a
SPAN Health Advocacy Across the Lifespan Manual Page 40 list of recommended immunizations at www2.aap.org/immunization/izschedule.html. The AAP also has a family page, including making educated decisions on vaccines and safety, at www2.aap.org/immunization/families/families.html.
A Special Note about Flu Prevention
Families of individuals with disabilities need to know that some people are at higher risk of flu complications. The Centers for Disease Control & Prevention has “People at High Risk of Developing Flu–Related Complications:” available at www.cdc.gov/flu/about/disease/high_risk.htm or Spanish http://espanol.cdc.gov/enes/flu/about/disease/high_risk.htm. In addition, The Arc national has information on “Steps You Can Take to Prevent the Flu” at www.thearc.org/document.doc? id=4470. Photo www.mybergen.com Vision Care
Vision care is an essential component for overall health. Children with poor eyesight may experience headaches, or miss out academically in school. In NJ, the Commission for the Blind & Visually Impaired of the Department of Health does free screenings and also works with schools on IEPs for low vision tools like slantboards, etc. An overview is found at www.state.nj.us/humanservices/cbvi/services/prevention/screening/ and more information specifically about services for children is available at www.state.nj.us/humanservices/cbvi/services/services/. Photo www.downsyndromedaily.com
Due to the importance of vision care to overall health, one of the 10 Essential Health Benefits under the Affordable Care Act is pediatric vision care. NJ FamilyCare also covers eyeglasses. Some families may still not have vision coverage, but there are programs that can help. These include:
New Eyes for the Needy - free vision care http://neweyesfortheneedy.org/apply-for-assistance/
One Sight http://onesight.org/news/events
Vision USA www.aoafoundation.org/vision-usa/how-to-apply/
SPAN Health Advocacy Across the Lifespan Manual Page 41 Wellness-general
There are other general resources on prevention and wellness that are beneficial to families of children with special needs. For the children themselves, Bright Futures has an activity book for children available in English and Spanish at http://brightfutures.aap.org/pdfs/BFActivityBook_L %200626.pdf?Site=nf.aap.org&WebKey=68530b27-2adb- 43ae-9c87- 2fa20cb86cae&url_keyword=Bright+Futures+Activity+Book. The book has pages to color, information on nutrition and activities, dental care, etc. Family Voices has “Family Matters: Promoting Health & Wellness for Children with Special Health Care Needs Family Booklet at
https://org2.salsalabs.com/o/6739/images/family_matters_book.pdf or Spanish at www.familyvoices.org/page?id=0005. This booklet helps parents with nutrition, physical activity, and reducing “screen time”—the time kids spend in front of computers, videogames, TV, Photo www.brightfutures.aap.org etc. For self-advocates, the Centers for Disease Control and Prevention “People with Disabilities: Living Healthy” website, at www.cdc.gov/features/disabilities/, discusses resources on healthy living for individuals with special needs. Miscellaneous
Abuse/Trauma Photo www.kidslinkcares.com Children and adults with special needs are more likely to experience trauma and abuse. Resources for support for families that are available include:
Domestic Violence www.state.nj.us/dcf/women/resources/countyresourcesdv.html
Family Success Centers (crisis prevention) www.state.nj.us/dcf/families/support/success/
Parents Anonymous (strengthening families)
SPAN Health Advocacy Across the Lifespan Manual Page 42 www.pa-of-nj.org/
Institutional Abuse (restraints/aversives/seclusion) www.state.nj.us/dcf/about/divisions/iaiu/
Building family skills and preventing crisis is the key to success. Also, getting help when needed is essential for individuals with special needs.
SPAN Health Advocacy Across the Lifespan Manual Page 43 Alternative and Complementary Medicine
Photo www.organicgardening.com There are some other health related concerns for families of individuals with special needs. For example, according to the National Institutes of Health, almost 12% of all children have been given an alternative medicine product. For children with multiple medical conditions, the number is almost double at close to 24%. Alternative medicine use for children with autism climbs to 40% (www.healthline.com.) It is essential that families inform their healthcare providers of any therapies, herbs, vitamins etc. they are using, as it may affect other health care such as prescription medication. The U.S. Department of Health & Human Services, National Institutes of Health created the National Center for Complementary and Alternative Medicine (NCCAM) to research which complementary therapies are being proven effective. Here, families and professionals can research conditions, such as allergies, or treatments, such as acupuncture. This information can be found at http://nccam.nih.gov/health/atoz.htm. Although the Spanish version doesn’t have A-Z topics, they do have guidelines “Are You Considering Complementary Medicine? at http://nccam.nih.gov/node/3858. Family-to-Family Utah also has an excellent factsheet “Alternative Therapies” at www.utahfamilyvoices.org.php5-5.dfw1- 2.websitetestlink.com/wp-content/uploads/2010/12/AlternativeTherapies.pdf. General
There are various resources for families of individuals with special needs if they need more information or assistance. Family-to-Family Health Information Centers can be found at https://org2.salsalabs.com/o/6739/images/F2FBrochure_07-11-2011.pdf and Family Voices state organizations are at www.familyvoices.org/admin/miscdocs/files/FV_Brochure_English.pdf or Spanish www.familyvoices.org/admin/miscdocs/files/FV_Brochure_Spanish.pdf. These are non-profit organizations run by families of children with special needs to help other parents. NJ was the first state to have the Parent Training and Information Center(PTI), Family Voices/Family-to- Family Health Information Center (FV/F2FHIC), and Parent-to-Parent (P2P)—in one location at the Statewide Parent Advocacy Network(SPAN)—to have one-stop shopping for free help for parents in education (PTI), Health (FV/F2F), and Support (P2P). The Family WRAP (Wisdom, Resources, Advocacy, Parent-to-Parent support) information at www.spanadvocacy.org/content/family-wrap-project-care (for Spanish click on “translate”) explains these projects with links to each. SPAN is also the home for the Integrated Systems of
SPAN Health Advocacy Across the Lifespan Manual Page 44 Care for Children with Special Needs with more information at www.spanadvocacy.org/content/integrated-systems-children-special-needs (for Spanish click on translate.) Here families will find information on the Maternal & Child Health six core outcomes of screening, medical home, community services, paying for care, transition to adult care, and family involvement. Family Voices national also has “What Do Families Say About Health Care for Children with Special Health Care Needs?” available at www.familyvoices.org/admin/miscdocs/files/National-Famrpt-1.pdf or Spanish www.familyvoices.org/admin/miscdocs/files/National-Famrpt-Spanish-1.pdf.
The Waisman Center has an excellent publication “Finding Your Way A Navigation Guide for Wisconsin Families Who Have Children and Youth with Special Health Care Needs and Disabilities” available at www.waisman.wisc.edu/cedd/pdfs/products/community/FYW_e.pdf or Spanish www.waisman.wisc.edu/cedd/pdfs/products/community/FYW_s.pdf. Another guide from Family Connection is “Roadmap to Success” at www.familyconnectionsc.org/resource- roadmap.html . The Wisconsin Council on Developmental Disabilities has a “Healthcare Toolkit” at www.wi-bpdd.org/publications/2010/Health%20Care%20Tool%20Kit%20Web.pdf . The National Arc has free webinars “Health Meet” on various topics and they are also archived to access anytime at www.thearc.org/page.aspx?pid=3686 . Lastly, the American Academy of Pediatrics has “Healthy Children” which is their family website and includes resources for special needs. Topics such as what to expect at what age, health conditions, and safety are on the site. It is available at www.healthychildren.org or Spanish www.healthychildren.org/spanish/Paginas/default.aspx.
Quality Assurance in Health Care
An important component of health care for individuals with special needs is access to quality care. Family Voices/ Family-to-Family New Hampshire has a booklet “Best Practices for Children and Youth with Special Health Care Needs” at http://nhfv.s481.sureserver.com/wp- content/uploads/2013/07/best_practices.pdf. This Photo www.childrenshealthfund.org guide has information on family-centered care, community based resources, medical home, and other important pieces of medical care that is of high quality. New England SERVE has an extensive report “Enhancing Quality: Standards and Indicators of Quality Care for Children with Special Health Care Needs.” This publication has information in addition to family-centered care such as health provider characteristics and is
SPAN Health Advocacy Across the Lifespan Manual Page 45 found at www.neserve.org/neserve/pdf/NES%20Publications/Enhancing_Quality.pdf. The National Association for Healthcare Quality, www.nahq, has information about healthcare quality ,as does the Agency for Healthcare Quality at http://www.ahrq.gov/. Families need to make sure that their family member with special needs have high quality care for best outcomes.
Support: Individuals/Families
Lastly, but perhaps most importantly, is family support for families of individuals with special needs. There are many different kinds of resources available to families. NJ is fortunate to now have a Department of Children and Families. For information on developmental disabilities and/or mental health for children, see www.state.nj.us/dcf/families/csc/. Please note that children should be transitioned to adult services as needed. For individuals with developmental disabilities, the Division of Developmental Disabilities is launching the new Supports Program and information can be found at www.state.nj.us/humanservices/ddd/programs/supportsprgm.html.
There are disability resources that explain what is available to families throughout the individual’s lifespan. The Division of Disability Services publishes an excellent guide” NJ Resources” annually and it’s found at www.state.nj.us/humanservices/dds/documents/RD %2014_webqxd.pdf or Spanish (2013) www.nj.gov/humanservices/dds/documents/RD13SpanishES.PDF. They also provide free help to families at their hotline at (888)285-3036. The Family Support Center (FSC) publishes a similar guide that goes into even more detail on explanations of programs. The FSC “Options Manual” is available at http://njcaregivers.org/wp-content/uploads/2013/08/Options2010.pdf or Spanish www.fscnj.org/wp-content/uploads/sites/4/2013/10/Options_Manual_Spanish.pdf. The FSC also has a searchable database so families can look for resources like transportation etc. at http://www4.irissoft.com/IFTWSQL4prod/show/home_show.aspx. They also have a hotline at (800) FSC-NJ10. Families of individuals with disabilities need to recognize that they have an extra role as caregiver. The Caregiver Action Network has a Family Caregiver Toolbox found at http://caregiveraction.org/resources/toolbox/. Here families can find information on communicating with health professionals, how technology assists with caregiving, financial planning etc.
Sometimes parents just need to talk to another parent who has experienced similar issues. NJ Parent-to-Parent matches trained volunteer parents to families of children with the same condition at www.spanadvocacy.org/content/nj-statewide-parent-parent (for Spanish click on “translate”). Friends Health Connection also matches people with the same condition, or their caregivers at http://friendshealthconnection.org. They also have free webinars with experts and have an online community. Some families prefer going to support groups to talk to other families. The NJ Self Help Clearinghouse has information statewide at www.njgroups.org/ or Spanish www.mededfund.org/NJgroups/Cultural-Language.pdf.
Families need to remember that they are the best advocates for their family member because they have a personal stake in the outcome and can teach them to self-advocate. In addition, because
SPAN Health Advocacy Across the Lifespan Manual Page 46 parents are with their child with special needs 24-7, they need to realize that they are the experts in their child’s strengths, needs, and development! Photo ww.dshs.state.tx.us
SPAN Health Advocacy Across the Lifespan Manual Page 47 SPAN Health Advocacy Across the Lifespan Manual Page 48 Sample letters and forms a. Sample letters appealing denials of services Source: www.healthlawadvocates.org/tools/documents/files/HLA-Guide-to-Appeals- 2-15-13.pdf pages 19-20
Sample Appeal Letter (1) [Your Name] [Address] [Phone Number]
(2) Sent by Certified Mail Return Receipt Requested
(3) [Date]
(4) [Insurer Name/Address]
(5) Patient Name: Member Name (if different): ID#: Group (if through an employer or group): Plan: Provider: Treatment: Treatment Date:
To Whom It May Concern:
(6) I am appealing the denial of [name of treatment] dated [date of denial] for service provided/requested on [date of service or authorization submission].
(7) The standard that is being applied to this treatment is [include the exact language from the denial notice].
(8) I have included a copy of the denial.
(9) I believe this denial should be overturned for the following reasons [list each of the reasons you meet the criteria, including, e.g., your medical needs, prior unsuccessful treatments, expected result].
SPAN Health Advocacy Across the Lifespan Manual Page 49 (10) I have enclosed a letter of support from my doctor that states [summarize the information in the doctor’s letter]. (11) I have included the following medical records [list the copies of documents (not originals) you are including].
(12) I have included a personal statement [if you are and briefly summarize it]. For the reasons outlined above, I request that the denial be reversed. Please do not hesitate to call me if you require additional information or have any questions.
Sincerely,
Your Name/Signature
(13) Enclosures
SPAN Health Advocacy Across the Lifespan Manual Page 50 b. Sample logs for communication with healthcare providers Exceptional Children’s Assistance Center- Care notebook- page 10 http://ecac-parentcenter.org/userfiles/F2F/Care%20Notebook%20FINAL%20ss %2012.1.09.pdf
SPAN Health Advocacy Across the Lifespan Manual Page 51 Exceptional Children’s Assistance Center- Libreata de Salud Pagina 10 http://ecac-parentcenter.org/userfiles/F2F/Care_Notebook_Spanish_Final_3-1-11.pdf
SPAN Health Advocacy Across the Lifespan Manual Page 52 c. Sample healthcare transition forms For Families: Transition Checklist for Caregivers –AAP Illinois (2 pages) www.spanadvocacy.org/sites/g/files/g524681/f/files/CaregiverChecklist_RE_0.pdf
SPAN Health Advocacy Across the Lifespan Manual Page 53 SPAN Health Advocacy Across the Lifespan Manual Page 54 SPAN Health Advocacy Across the Lifespan Manual Page 55 For Youth and Self-advocates Got Transition http://www.gottransition.org/UploadedFiles/Files/NHCTC_ReadinessYouthTool_06_ Oct_2011.pdf
SPAN Health Advocacy Across the Lifespan Manual Page 56 d. Sample consent to release information forms (to share health information with schools and other providers) Medical release form
SPAN Health Advocacy Across the Lifespan Manual Page 57 American Academy of Family Physicians-Authorization Form www.aafp.org/fpm/2003/0200/p29.html
Authorization form
Your Practice Name
Patient Authorization for Use and Disclosure of Protected Health Information
By signing, I authorize [Insert name of practice] to use and/or disclose certain protected health information (PHI) about me to ______. This authorization permits [Insert name of practice] to use and/or disclose the following individually identifiable health information about me (specifically describe the information to be used or disclosed, such as date(s) of services, type of services, level of detail to be released, origin of information, etc.): The information will be used or disclosed for the following purpose: (If disclosure is requested by the patient, purpose may be listed as “at the request of the individual.”) The purpose(s) is/are provided so that I can make an informed decision whether to allow release of the information. This authorization will expire on [enter date or defined event].
The Practice will ___ will not ___ receive payment or other remuneration from a third party in exchange for using or disclosing the PHI.
I do not have to sign this authorization in order to receive treatment from [insert name of practice]. In fact, I have the right to refuse to sign this authorization. When my information is used or disclosed pursuant to this authorization, it may be subject to redisclosure by the recipient and may no longer be protected by the federal HIPAA Privacy Rule. I have the right to revoke this authorization in writing except to the extent that the practice has acted in reliance upon this authorization. My written revocation must be submitted to the privacy officer at:
[Insert name and address of practice]
Signed by: ______Signature of Patient or Legal Guardian Relationship to Patient
SPAN Health Advocacy Across the Lifespan Manual Page 58 ______Print Patient’s Name Date
______Print Name of Patient or Legal Guardian, if applicable
Patient/guardian must be provided with a signed copy of this authorization form.
Note: This document is a template only. It does not reflect the requirements of your state’s laws. You should consult with advisors (e.g., your state or local medical or specialty society, or legal or other counsel) familiar with your state’s privacy laws prior to using this document.
Copyright © 2002 Gates, Moore & Company. Used with permission. “The HIPAA Privacy Rule: Three Key Forms.” Bush J. Family Practice Management. February 2003:29-33, www.aafp.org/fpm/20030200/29theh.html.
Copyright © 2018 by the American Academy of Family Physicians. All rights reserved.
School release form American Academy of Pediatrics-Clinical Topics-Confidentiality HIPAA/FERPA Information Release Form 1
SPAN Health Advocacy Across the Lifespan Manual Page 59 https://schoolhealthteams.aap.org/public/content.cfm? m=13&id=13&startRow=1&mm=0&parentMenuID=0
______School District AUTHORIZATION FOR USE OR DISCLOSURE OF HEALTH INFORMATION TO AND FROM SCHOOLS Completion of this document authorizes the disclosure and/or use of individually identifiable health information, as set forth below, consistent with federal laws (e.g., HIPAA) concerning the privacy of such information. Failure to provide all information requested may invalidate this authorization. USE AND DISCLOSURE INFORMATION: Patient/Student Name: /
Last First MI Date of Birth I, the undersigned, do hereby authorize (name of health care provider, health plan and/or agency): (1) (2)
to provide health information from the above-named child’s medical record to and from:
School District to Which Disclosure Is Made Address / City and State / Zip Code
Contact Person at School District Area Code and Telephone Number
Disclosure of health information is required for the following purpose: ______Requested information shall be limited to the following: All minimum necessary health information; or Disease-specific information as described: ______DURATION:
SPAN Health Advocacy Across the Lifespan Manual Page 60 This authorization shall become effective immediately and shall remain in effect until ______(enter date) or for one year from the date of signature, if no date entered. RESTRICTIONS: [California] law prohibits the Requestor from making further disclosure of my health information unless the Requestor obtains another authorization form from me or unless such disclosure is specifically required or permitted by law. YOUR RIGHTS: I understand that I have the following rights with respect to this Authorization: I may revoke this Authorization at any time. My revocation must be in writing, signed by me or on my behalf, and delivered to the health care agencies/persons listed above. My revocation will be effective upon receipt but will not be effective to the extent that the Requestor or others have acted in reliance to this Authorization. RE-DISCLOSURE: I understand that the Requestor (School District) will protect this information as prescribed by the Family Educational Rights and Privacy Act (FERPA) and that the information becomes part of the student’s educational record. The information will be shared with individuals working at or with the School District for the purpose of providing safe, appropriate, and least restrictive educational settings and school health services and programs. I have a right to receive a copy of this Authorization. Signing this Authorization may be required in order for this student to obtain appropriate services in the educational setting. APPROVAL:
Printed Name Signature Date
Relationship to Patient/Student Area Code and Telephone This form may be duplicated or changed to suit your needs and your patients’ needs.
SPAN Health Advocacy Across the Lifespan Manual Page 61 e. Sample healthcare power of attorney forms American Academy of Family Practitioners-Advance Directive/Power of Attorney Form www.aafp.org/afp/1999/0201/p617.html
Please note: This information was current at the time of publication. But medical information is always changing, and some information given here may be out of date. For regularly updated information on a variety of health topics, please visit familydoctor.org, the AAFP patient education Web site. Sample Advance Directive Form Am Fam Physician. 1999 Feb 1;59(3):617-620. This form is a combined durable power of attorney for health care and a living will (in some jurisdictions). With this form, you can name someone to make medical decisions for you if in the future you're unable to make those decisions yourself. You can also say what medical treatments you want and what medical treatments you don't want if in the future you're unable to make your wishes known. Instructions Read each section carefully. Before you fill out the form talk to the person you want to name, to make sure that he/she understands your wishes and is willing to take the responsibility. Write your initials in the blank spaces before the choices you want to make. Write your initials only beside the choices you want under Parts 1, 2 and 3 of this form. Your advance directive should be valid for whatever part(s) you fill in, as long as it is properly signed. Add any special instructions in the blank spaces provided. You can write additional comments on a separate sheet of paper, but you should write on this form that there are additional pages to your advance directive. Sign the form and have it witnessed. Give copies to your doctor, your nurse, the person you name to make your medical decisions for you, people in your family and anyone else who might be involved in your care. Discuss your advance directive with them. Understand that you may change or cancel this document at any time. Definitions to Know Advance directive—A written document (form) that tells what a person wants or doesn't want if he/she in the future can't make his/her wishes known about medical treatment. Artificial nutrition and hydration—When food and water are fed to a person through a tube. Autopsy—An examination done on a dead body to find the cause of death. Comfort care—Care that helps to keep a person comfortable but doesn't make him/her get well. Bathing, turning and keeping a person's lips moist are types of comfort care. CPR (cardiopulmonary resuscitation)—Treatment to try to restart a person's breathing or heartbeat. CPR may be done by pushing on the chest, by putting a tube down the throat or by other treatment. Durable power of attorney for health care—An advance directive that names someone to make medical decisions for a person if in the future he/she can't make his/her own medical decisions. Life-sustaining treatment—Any medical treatment that is used to keep a person from dying. A breathing machine, CPR, and artificial nutrition and hydration are examples of life-sustaining treatments.
SPAN Health Advocacy Across the Lifespan Manual Page 62 Living will—An advance directive that tells what medical treatment a person does or doesn't want if he/she is not able to make his/her wishes known. Organ and tissue donation—When a person permits his/her organs (such as the eyes or kidneys) and other parts of the body (such as the skin) to be removed after death to be transplanted for use by another person or to be used for experimental purposes. Persistent vegetative state—When a person is unconscious with no hope of regaining consciousness even with medical treatment. The body may move and the eyes may be open, but as far as anyone can tell, the person can't think or respond. Terminal condition—An ongoing condition caused by injury or illness that has no cure and from which doctors expect the person to die even with medical treatment. Life-sustaining treatments will only prolong the dying process if the person is suffering from a terminal condition. Complete this portion of advance directive form I, ______, write this document as a directive regarding my medical care. In the following sections, put the initials of your name in the blank spaces by the choices you want. PART 1. My Durable Power of Attorney for Health Care ______I appoint this person to make decisions about my medical care if there ever comes a time when I cannot make those decisions myself. I want the person I have appointed, my doctors, my family and others to be guided by the decisions I have made in the parts of the form that follow. Name: ______Home telephone: ______Work telephone: ______Address: ______If the person above cannot or will not make decisions for me, I appoint this person: Name: ______Home telephone: ______Work telephone: ______Address: ______I have not appointed anyone to make health care decisions for me in this or any other document. PART 2. My Living Will These are my wishes for my future medical care if there ever comes a time when I can't make these decisions for myself. A. These are my wishes if I have a terminal condition Life-sustaining treatments _____ I do not want life-sustaining treatment (including CPR) started. If life-sustaining treatments are started, I want them stopped. _____ I want the life-sustaining treatments that my doctors think are best for me. _____ Other wishes ______Artificial nutrition and hydration
SPAN Health Advocacy Across the Lifespan Manual Page 63 _____ I do not want artificial nutrition and hydration started if they would be the main treatments keeping me alive. If artificial nutrition and hydration are started, I want them stopped. _____ I want artificial nutrition and hydration even if they are the main treatments keeping me alive. _____ Other wishes ______Comfort care _____ I want to be kept as comfortable and free of pain as possible, even if such care prolongs my dying or shortens my life. _____ Other wishes ______B. These are my wishes if I am ever in a persistent vegetative state Life-sustaining treatments _____ I do not want life-sustaining treatments (including CPR) started. If life-sustaining treatments are started, I want them stopped. _____ I want the life-sustaining treatments that my doctors think are best for me. _____ Other wishes ______Artificial nutrition and hydration _____ I do not want artificial nutrition and hydration started if they would be the main treatments keeping me alive. If artificial nutrition and hydration are started, I want them stopped. _____ I want artificial nutrition and hydration even if they are the main treatments keeping me alive. _____ Other wishes ______Comfort care _____ I want to be kept as comfortable and free of pain as possible, even if such care prolongs my dying or shortens my life. _____ Other wishes ______C. Other directions You have the right to be involved in all decisions about your medical care, even those not dealing with terminal conditions or persistent vegetative states. If you have wishes not covered in other parts of this document, please indicate them below. ______
SPAN Health Advocacy Across the Lifespan Manual Page 64 ______PART 3. Other Wishes A. Organ donation _____ I do not wish to donate any of my organs or tissues. _____ I want to donate all of my organs and tissues. _____ I only want to donate these organs and tissues: ______Other wishes ______B. Autopsy _____ I do not want an autopsy. _____ I agree to an autopsy if my doctors wish it. _____ Other wishes ______C. Other statements about your medical care If you wish to say more about any of the choices you have made or if you have any other statements to make about your medical care, you may do so on a separate piece of paper. If you do so, put here the number of pages you are adding: ______PART 4. Signatures You and two witnesses must sign this document before it will be legal. A. Your signature By my signature below, I show that I understand the purpose and the effect of this document. Signature ______Date ______Address ______B. Your witnesses' signatures I believe the person who has signed this advance directive to be of sound mind, that he/she signed or acknowledged this advance directive in my presence and that he/she appears not to be acting under pressure, duress, fraud or undue influence. I am not related to the person making this advance directive by blood, marriage or adoption nor, to the best of my knowledge, am I named in his/her will. I am not the person appointed in this advance directive. I am not a health care provider or an employee of a health care provider who is now, or has been in the past, responsible for the care of the person making this advance directive. Witness #1
SPAN Health Advocacy Across the Lifespan Manual Page 65 Signature ______Date ______Address ______Witness #2 Signature ______Date ______Address ______
Adapted with permission from the District of Columbia Hospital Association, 1250 Eye, N.W., Suite 700, Washington, DC 20005; telephone: 202-682-1581; fax: 202-371-8151. This handout is provided to you by your family doctor and the American Academy of Family Physicians. Other health-related information is available from the AAFP online at http://familydoctor.org.
This information provides a general overview and may not apply to everyone. Talk to your family doctor to find out if this information applies to you and to get more information on this subject. Copyright © 1999 by the American Academy of Family Physicians. This content is owned by the AAFP. A person viewing it online may make one printout of the material and may use that printout only for his or her personal, non-commercial reference. This material may not otherwise be downloaded, copied, printed, stored, transmitted or reproduced in any medium, whether now known or later invented, except as authorized in writing by the AAFP. Contact [email protected] for copyright questions and/or permission requests.
NJ FamilyCare Guidelines
SPAN Health Advocacy Across the Lifespan Manual Page 66 http://www.njfamilycare.org/income.aspx
What do the terms mean? Accessibility Removing barriers so people can get a service, participate in the community, etc.
Alternative Medicine Care outside of traditional medical care.
Advocacy Speaking on behalf of yourself or someone else so they get what they need.
SPAN Health Advocacy Across the Lifespan Manual Page 67 Advance Directive A person’s wishes for medical care, usually at the end of life.
Affordable Care Act (ACA) Improving health care, covering more people, providing patient protections, and helping with cost.
Appeal Asking the insurance company to take a new look at a claim they turned down.
Care Coordination All providers work together on a person’s health care needs.
Care Manager Helps the person put together their health care services.
Caregiver Someone who cares for another who can’t do everything him or herself.
Comprehensive Care Supports the patient’s needs through their lifetime.
Coordination of Benefits Figuring out who pays what when there is more than one insurance.
Cultural Competency Understanding and respecting that people from other cultures may have different beliefs toward health care, disability, etc.
Diagnosis The name of the condition.
Disabled Adult Child (DAC) Someone who is disabled before age 22 and has a parent that is disabled, retired, or passed on.
Dual Eligible (in terms of health insurance coverage) A person who can be on both Medicaid and Medicare.
Early Intervention Services for children with special needs from birth to age 3, some of which are at no cost to families.
Early Periodic Screening Diagnostic and Treatment (EPSDT) Medicaid services for children to ensure children get what they need.
SPAN Health Advocacy Across the Lifespan Manual Page 68 Emergency Preparedness Being ready in case of natural disaster.
Essential Health Benefits (EHB) 10 services under the ACA that must be covered by health plans.
Family-Centered Families and professionals are partners in care. The knowledge and wishes of families are respected by professionals.
Family-to-Family Health Information Center/Family Voices Help families of children with special needs find services.
Family Support Services to help parents of children with special needs.
Genetics How parents may pass on conditions to their child.
Guardianship Taking charge of someone’s life when they are an adult.
Health Insurance Portability and Accountability Act (HIPAA) Keeps the person’s health information private.
Health Information Technology How details on a person’s condition is stored (usually on a computer.)
Health Maintenance Organization (HMO) A type of plan under managed care.
Managed Care Patients can only visit certain providers in the “network” and their doctor needs to give the ok to see other doctors.
Medicaid Public insurance that covers people with low income or disabilities
Medical Home An idea where the team of doctors work together for best care.
Medicare Public insurance that covers people over 65 or with certain disabilities.
Network Doctors, drugstores, and hospitals covered by an insurance plan.
SPAN Health Advocacy Across the Lifespan Manual Page 69 People First Language Recognizing that people with disabilities are people first and not their disability.
Power of Attorney Another person’s authority to decide on care for an adult.
Prescription Medicine authorized by a doctor.
Preventive care Wellness care to prevent disease.
Primary Care Provider (PCP) The main doctor the person uses.
Quality Assurance Making sure care is of good value.
Referral The Primary Care Provider gives the ok to see another doctor or service.
Regional Early Intervention Collaboratives Help families of children from birth to age 3 with early intervention in New Jersey.
Screening Tests to decide if the child is at risk; screening is not a diagnosis.
Self Advocacy Speaking up for yourself and having control.
Shared Decision-Making The family and doctor decide together on choices for care.
State Children’s Health Insurance Program (SCHIP) Medicaid plan for children.
Stigma Negative, untrue, and unfair beliefs about a condition, a disability, etc.
Supplemental Security Income Money for children with disabilities based on family income (family income no longer counts as the person’s income at age 18.)
Title V
SPAN Health Advocacy Across the Lifespan Manual Page 70 Programs for mothers and children with special needs.
Transition (health) Changing from child to adult health care.
Vaccine preventable disease Shots to avoid illness.
SPAN Health Advocacy Across the Lifespan Manual Page 71