A GPS for Families of People with Special Needs – Part II



I wrote this manual to help other families of individuals with special needs and the professionals who work with them. My daughter now has five 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. Part II follows; to review Part I, see the September issue of EP magazine.


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-healthcareaffects-our-families-lauren-agoratus. Family Voices national has information on “Diversity & Cultural Competence” at www.familyvoices.org/work/diversity. The National Centerfor Cultural Competence has “In Their Own Voices:Cultural Competence and Health Promotion” at http://nccc.georgetown.edu/features/voices.html.


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, 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.


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 preexisting 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/planscategories.
For New Jersey’s essential health benefits, see www.cms.gov/cciio/resources/data-resources/downloads/new-jersey-ehb-benchmark-plan.pdf.

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 z 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 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 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 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 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 selfadvocates 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 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.


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 Ppecial 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.


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.

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


Emergency Preparedness – Temple University AUCD Pennsylvania


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)
Lauren Agoratus, M.A. is the parent of a child with multiple disabilities who serves as the Coordinator for Family Voices-NJ and as the central/southern coordinator in her state’s Family-to-Family Health Information Center, both housed at the Statewide Parent Advocacy Network (SPAN) at www.spanadvocacy.org


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