Long Day's Journey into Financial Light: Part I, Public Funding Sources
Imagine walking through a very long tunnel. You finally see the end of the tunnel bathed in light and feel a tremendous sense of relief, perhaps even exultation. But since your eyes have not adjusted to the light, you actually have no idea what is waiting for you just outside—maybe a grassy field and gentle stream, maybe a hungry bear, or maybe the light is really an oncoming train. Families with autistic teens approaching legal adulthood often see the light of a high school diploma or certificate of completion as the end of their own tunnel. Unfortunately, financially speaking, that light is more likely to be an oncoming train than a sunlit grassy knoll.
Financial preparation for a lifetime of autism is a daunting task. A family must assess what private/personal financial resources can reasonably be earned or expended over the lifetime of the autistic individual, and attempt to combine them with publicly available funding in a way that does not disqualify an autistic person from receiving public support. This is a delicate balancing act. Furthermore, the public support consists of disparate programs, individually legislated sometimes by federal and other times by state governments—some aimed at poverty, others at disability—that are rarely coordinated. The result is a confusing mess. There is no “U.S. Autism Program,” and before you think, “Well, they should do something about that!” understand that there is no “they.” You are “they.” So as you take a deep breath here are a few maxims to bear in mind:
- This is a marathon, not a sprint. Unless full-time employment for the autistic individual is a plausible expectation, it makes little sense to exhaust precious family financial resources on expensive, specialized but ultimately financially unsustainable programs immediately after high school. Neurotypical families might shell out big bucks to send their child to Princeton, but he will not spend the rest of his life running up tuition bills there.
- But sprinting to get in line for public programs is necessary... Most adults with a full autism diagnosis probably have low enough income and assets, and have a severe enough disability, to qualify for Supplemental Security Income (SSI) from the Social Security Administration. Qualifying for SSI is a process which may become protracted due to denials, but if successful, provides a monthly income and opens other funding doors (e.g., Medicaid eligibility in most states). Many funding streams, especially those sponsored exclusively at the state rather than federal level, have long and lengthening wait lists so one should get on them ASAP. Generally speaking, federal programs are more securely funded than state and local programs.
- ...because eligibility does not equal entitlement. When a young adult with autism leaves the public school system at the age of 18, 19, 20 or 21, he is no longer entitled by law to receive a variety of services but instead is eligible to receive services and assistance from programs for which he qualifies if funding is available. An autistic adult may qualify for programs aimed at disabled persons or at people living below defined poverty levels. SSI is a program designed for disabled persons who are poor. Examples of major poverty-based programs include medical (Medicaid), housing (Housing Choice Vouchers aka Section 8), and nutritional (Supplemental Nutritional Assistance Program [SNAP] aka Food Stamps) assistance. Also, some programs provide funding/service to everyone whose application is approved (e.g., SSI, Medicaid and SNAP), while others, such as Section 8 Housing and Medicaid Waiver programs typically will serve a limited number of applicants, meaning that a wait listing is likely. It may be wise for families to focus most of their energy on applications for programs that serve all qualifying applicants.
- High school students age 16 and over should use the transition process to explore financial and potential employment assistance that may be available in your state. The transition specialist in your school system is likely familiar with vocational rehababilitation, housing assistance, day habilitation assistance, and other state-specific programs, most of which will probably have waiting lists. Get on these waiting lists as soon as possible. Transition services, provided correctly, ought to “grease the skids” into these state programs but the wait times may be lengthy.
Supplemental Security Income , Administered by the Social Security Administration (SSA)
What It Is:
SSI is a federal program designed to provide income for disabled people who have little or no income and very limited assets. A full autism diagnosis will generally be considered a “marked and severe” impairment which should qualify a child as disabled, and prevent an adult from procuring “substantial gainful activity” which is the adult standard for disability. SSI is arguably the most important public benefit that an autistic person can qualify for, not only because it provides a monthly income, but also because its strict disability and income/asset requirements mark an SSI recipient as likely to qualify for a multitude of other public benefit programs as well. It can be a de facto passport to other services. Individuals qualifying for SSI must have income below the federal benefit rate of $674 per month ($1011 for married couple), which is equal to the maximum benefit that SSI will pay out. Personal assets are limited to $2000 per individual or $3000 for a married couple. However, there are certain payments made to an individual that are not counted against income, such as the first $20 of most income received per month as well as the first $65 per month of wages and half of the wages over $65 per month, as well as certain other public benefits such as food stamps. However, other benefits, such as the rental value of a young adult living in his parent’s house, may be considered the equivalent of income for that young adult. Per the asset limit, the home a person lives in, the land it is on, and often a vehicle or other assets required for holding a job are examples of things not counted against the $2000 limit. Families who have income and assets greater than these limits may be able to shelter assets to be used for caring for an autistic family member by setting up a special needs trust.
How To Get It
Since SSI is a program that is designed for disabled persons only, you must be able to document your disability as well as your financial status. Be prepared to provide a diagnosis from a physician and, if an adult, a professional opinion that your condition will prevent you from engaging in substantial gainful activity. If a child applies for SSI, his parents' income and assets are counted against the limits described above. For some families this means that it makes more sense to wait until an autistic person turns 18 to apply for benefits. However, most initial applications for SSI are turned down and persons must reapply after learning what parts of their application the SSA finds deficient. So advice from lawyers and social workers is: Prepare documentation of disability rigorously, apply early, anticipate an initial denial, reapply, and keep fighting. One can begin the application process at your local Social Security office or online. A freely available overview of SSI, as well as a link to the excellent book, Nolo's Guide to Social Security Disability, is available on the Nolo website. The Supplemental Security Income page has links that will take you to the Benefit Eligibility Screening Tool as well as to the application process which will eventually culminate in a face-to-face meeting/interview by SSA personnel. In addition, the Ohio Center for Autism and Low Incidence (OCALI) website offers a video interview with a parent and autism advocate who describes the SSI application process based on his own experience as well as those of the clients he has represented.
Social Security Disability Insurance (SSDI) – Administered by the SSA
What It Is
SSDI is a federal program which provides income to disabled workers and their dependants who have what we will refer to as a "Qualifying Work History" (QWH) and thus have paid FICA payroll taxes and earned enough work credits to qualify for social security benefits. There are three types of SSDI benefits that may be provided: (1) to the individual with a QWH who has become disabled before age 65; (2) to disabled children or to the disabled adult children (who were disabled prior to age 22) of someone who has a QWH; or (3) to widows or widowers age 50 or older of deceased persons with a QWH. Since few autistic people have QWHs, and since relatively few get married, benefit (2), known as the Childhood Disability Benefit is most likely to impact people with autism. Applications for SSDI, like those for SSI, are made to the SSA, which should determine eligibility for both programs with a single application. (In theory, anyway. You will need to verify this upon application.)
There are some important differences between SSI and SSDI: (1) SSDI payments are based on the earnings of the person with a QWH, and therefore may be higher or, occasionally, lower than the maximum SSI benefit; (2) Although there is a mandatory five-month waiting period before SSDI payments begin, the SSA may determine that a claimant is owed benefits retroactively, i.e., before the application was submitted, which will not happen with an SSI application; (3) Twenty-four months after SSDI benefits begin, a claimant automatically qualifies for Medicare coverage, whereas there is no automatic Medicaid coverage as usually occurs for SSI claimants. If SSDI benefits are low enough, a claimant may also qualify for SSI.
Thinking About SSI and SSDI Together
Example: Johan, 53, and Dorothy Jones, 50, have 16-year-old son, Mike, who has a full autism diagnosis. Both Johan and Dorothy have QWHs and Johan is still working full time. Family income and assets are above limits to enable Mike to qualify for SSI. Knowing that Mike will be denied benefits, the Joneses may wish to wait until Mike is one month from his 18th birthday in order to begin the SSI application process. If Johan retires in twelve years, they may wish to reapply for SSDI benefits for Mike, which might be greater than SSI benefits, and eventually enable Mike to qualify for Medicare coverage.
Medicaid, Administered By the Centers For Medicare and Medicaid Services and the States
What It Is
Medicaid is a federal program, administered primarily at the state level, and funded jointly by federal and state sources, that provides health care and other services to people under state-defined poverty levels. In some states the program goes by other names, such as Medi-Cal in California. For most people with autism, access to the Medicaid and SSI programs are the two most important sources of financial support in their lives. In most states, if you qualify for SSI you automatically qualify for Medicaid. In seven states you will qualify after a separate application process: AK, ID, KS, NE, NV, OR, and UT. The eleven states with separate eligibility rules include: CT, HI, IL, IN, MN, MO, NH, ND, OH, OK and VA. One may qualify for Medicaid without qualifying for SSI since in some states effective income/asset limits are higher (particularly in the 34 states that recognize the concept of “Medically Needy”) and Medicaid does not require recipients to be disabled. One can qualify for Medicare, through SSDI, for example, and still be eligible to qualify for Medicaid.
The Medicaid program provides both mental and physical health care benefits, and the states define what services and procedures are covered. Some of these services may include therapy or day services for people who are considered developmentally disabled. The Medicaid program also provides long term skilled care (nursing home care) for elderly people whose assets and income have been exhausted.
Almost all states have chosen to offer services through Medicaid “Waiver” programs that allow states to provide services outside of traditional federal Medicaid mandates. There is widespread use of Home and Community Based Services (HCBS) Section 1915 (c) Waivers which allow states to provide in home/community services in lieu of institutional services. “Olmstead” Waivers, named after the 1999 Supreme Court ruling, are similar and are specifically aimed at people with disabilities. A few states have waiver programs that are specific to autism. However, funding for waiver programs is generally limited and waiting lists for services are usually long. Unfortunately, waits of seven years are not unusual. A good source for further information is the video interview of Gary Tonks found on the OCALI website.
How To Get It
You can apply for Medicaid benefits at your local Medicaid office.
Housing Assistance Programs, Administered by Housing and Urban Development (HUD) and the US Department of Agriculture (USDA)
What It Is
The primary program for low income housing is the Housing Choice Voucher Program (HCVP)--also known as "Section 8" housing. which is a federal program overseen by the U.S. Department of Housing and Urban Development (HUD) but administered primarily at the local level. Generally, the program is aimed at people with incomes under 50% (and especially under 30%) of the median income for the local area, and/or elderly and disabled persons. These programs assist paying rent, and in some cases can assist in purchasing a home, but housing providers must be participating in the HCVP. The HCVP is administered by local Public Housing Agencies (PHAs), which accept applications, keep waiting lists and administer payments. In general, families are expected to find appropriate housing themselves and apply the HCVP subsidy--which varies--toward their rent. Typically, persons receiving HCVP assistance are expected to pay about 30% of their income toward rent.
For persons living in rural areas--usually defined as having populations under 10,000--the U.S. Department of Agriculture (USDA) has Rural Development Programs that assist low income people with housing:
- The Rural Rental Program (Section 515) provides subsidies to renters who find housing from participating program providers.
- The Single Family Home Loan Program (Section 502) provides subsidized mortgages to low income families which can sometimes be combined (or “leveraged”) with traditional bank financing.
- The Home Repair Loan and Grant Program (Section 504) provides low interest loans, and in some cases grants, for home repair.
How To Get It
In order to qualify for an HCVP, persons should apply to their local PHA. If successful, an applicant will typically be added to a wait list. Often, however, wait lists are full and the PHA is not accepting applications so you must check back periodically.
Supplemental Nutritional Assistance Program (SNAP) – Administered by the USDA
What It Is
SNAP, often referred to by its former program name “Food Stamps,” is a federal program administered primarily at the state level that provides payments to households below state-defined poverty lines that can be used to purchase food from participating retailers. Like the Medicaid program, SNAP sometimes goes by other names, such as the Food Supplement Program (FSP) in Maryland. As of mid-2011, 45 million Americans received some form of SNAP assistance, or almost 15% of the U.S. population. Since eligibility is based on household income (gross 130%/net 100% of poverty) and resource ($2000 or $3000 per household) limits, autistic adults living with other family will have eligibility impacted by income and resources of that family. Autistic individuals living independently and who are receiving SSI should qualify for SNAP allotments, since SSI income and asset limits are generally more restrictive than SNAP limits. If an applicant qualifies for SNAP he will be issued an Electronic Benefit Transfer (EBT) card which may be swiped like a debit card at a participating grocery store or retailer. The (rather complicated) calculation of monthly benefit--called an “allotment"--varies by income level, size of household and certain qualifying household expenses. Based on $64.4 billion of benefits allotted by the program in fiscal 2010, we estimate that an average recipient receives about $120 per month in benefits.
How To Get It
You must apply at a local SNAP office, and generally have a face-to-face interview during which you should be prepared to document income and resource levels and qualifying expenses. Proof of SSI receipts will generally be helpful in establishing eligibility.
Other Federal Programs
There are a large variety of federal government assistance programs. Two examples of programs which may be applicable to autistic individuals, and websites with eligibility and application information, are:
Low Income Home Energy Assistance Program (LIHEAP): Overseen by the U.S. Department of Health and Human Services (HHS) these federally funded block grants are state administered and aimed at households between 110% and 150% of the poverty level to help pay for home heating bills
Temporary Assistance for Needy Families (TANF): Formerly AFDC (often referred to as “welfare"), this program is overseen by HHS. These federally-funded block grants are administered by the states.
The website Benefits.gov is a good place to explore various U.S. Government programs for which you may qualify. There is a Benefit Finder tool, or you may browse by topic, (e.g., Disability Assistance), by federal agency, or by state. Only federal programs are included on this site, although many are state administered.
Other State Programs
There are many different state programs across the various states which autistic individuals may qualify for. All states have a disabilities services agency which, like motor vehicle departments, goes by different names in different states. These agencies typically provide funding for vocational rehabilitation, residence, day habilitation, transportation services, etc. You should contact this agency within your state as soon as possible to get information on programs and eligibility. State programs may be for children or adults, but many are wait-listed so there is no reason to wait until adulthood to contact these agencies.
There is an excellent state-specific financial article posted by Pathfinders For Autism in Maryland entitled “Financial Things Every Parent Should Know” which is quite helpful for Maryland residents, but also serves as an example of how many different state resources may exist besides those mentioned here.