The financial side of having a child with special needs

financial sideServices [for those with special needs] are seldom available to anyone who does not have the wherewithal to battle agencies. Doing so often requires education, time, and money—which is a painful irony given that these services are intended to benefit people who may be short on all three.
—Andrew Solomon, Far from the Tree

Having a child with special needs typically comes with increased expenses. Deciding to spend money on a service can mean not spending money on something else for your family. Depending on each of our circumstances, there are various decisions and options. Sometimes it seems as though there are not options, or the options seem too complex to understand.

Health Insurance: New — and still being understood — is how to navigate the requirement in California for insurance policies to offer coverage for ABA (behavior services) for children on the autism spectrum. Sites that help explain this law include:

For other health-related services, insurance policies vary in what they cover and how much their co-pays and deductibles are. Sometimes the diagnostic and service codes put on a bill by a provider are key to whether or not the service will be reimbursed. Often it’s not clear whether a service is a healthcare expense or not; for example, does a “psycho-educational assessment” fall under the domain of health insurance? What if it is called a “neuro-psych assessment” instead?

Regional Center: If your child is a Regional Center client, services can be purchased by the Regional Center if they’re needed because of your child’s disability, documented in your child’s Individual Program Plan, and if there is no other agency (school, medical insurance, etc.) responsible for providing those services. That means Regional Centers are the “payor of last resort.”

In the last few years, there have been a lot of changes to what Regional Centers will and will not pay for. However, it is important to know that decisions must still be determined based on individual need, and “cost-effective” does not necessarily mean the cheapest service available.

As of July 1, 2012, private health insurance must cover the cost of behavior services for people with autism or other pervasive developmental disorders. This law does not apply to Medi-Cal or to Healthy Families or to what are called “self-insured health plans.” There is disagreement over whether or not Regional Centers must reimburse families for their co-pays and deductibles when families pay for behavior services through health insurance. Contact your insurance company to find out about your particular situation. Be persistent in asking Regional Center to cover those added costs! For more information,  see this handout from Disability Rights California.

If you do not have IHSS Protective Supervision hours, Regional Center may pay for respite and may pay a portion of your daycare costs. If your child is older than 3, you may get help with paying for diapers. A workshop on Regional Centers services will be presented by Matrix, Area Board 4 on Developmental Disabilities, and the Office of Clients Rights Advocacy on Saturday, April 27, in Fairfield. Download a flyer here.

Tax deductions: Some expenses incurred in caring for a child with special needs can be deducted on your income tax return. This is a complex area to navigate. Tax laws change from year to year and include many variables, definitions, and requirements (you may need a letter from a physician saying that the expense was medically necessary, for example; also, unreimbursed expenses need to be a certain percentage of your income or more). Consulting with a tax expert or getting current tax information can help.

Medi-Cal and Healthy Families Program: Medi-Cal provides health coverage for qualifying low-income Californians. There are many different Medi-Cal programs, so if you are not eligible under one program, you or your child may be eligible under another Medi-Cal program. Healthy Families Program (HFP) is a low-cost health insurance program for children who do not have other insurance and do not qualify for free Medi-Cal. As of January 1, 2013, there will be no new enrollments in Healthy Families. However, the Medi-Cal program will continue to provide health, dental, and vision benefits to uninsured children, and Medi-Cal coverage will now go up to the HFP income level and provide coverage to all children that were previously HFP eligible. See the Healthy Families website for details.

SSI: Some children with disabilities may qualify for Supplemental Security Income (SSI). Parent income is used when determining if a child qualifies for SSI. Sometimes, through what is called institutional deeming, a child may be eligible for SSI even if a parent’s income is above the eligibility limits (see the handout from Disability Rights California). Your child with a disability may also qualify for Social Security through a parent’s work record if the parent retires, becomes disabled, or dies. Someone can change from SSI to SSDI, which may increase the monthly benefit amount, and not lose their Medi-Cal [link to SSI.SSDI pdf COMING]. For more information on SSI for your child, see our Matrix Help! sheet about SSI.

Even with various avenues for reimbursement, out-of-pocket expenses can pile up and cause stress in the family. Our online chat group is a forum where parents can offer tips, support, and suggestions to other parents. Most Matrix workshops and trainings are free; see the calendar for a list of what’s coming up.

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