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



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 III follows; to review Parts I and II, see the September and October issues of EP magazine.


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 www.nafcclinics.org.

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%20Spanis h_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 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

Possibilities: A Financial Resource Book for Parents of Children with Disabilities-PACER Center


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 www.jhsph.edu/research/centers-andinstitutes/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 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)

Help for Families with Health Insurance Issues:
Family Matters – Family Voices national

Things to Consider When Evaluating a Health Insurance Plan:
Family Voices/Family-to-Family Alabama www.hinkle1.com/pdf/health_care_rights.pdf

Help for Families with Health Insurance Issues:
Family Matters-Family Voices national www.thefamilymatterswebsite.org/PDF/GuideDealingwithInsuranceCo.pdf

Children’s Specialized Hospital-Health Insurance Education


The use of Health Information Technology (HIT) has many benefits, 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 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/.

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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