Government Benefits For The Neurodiverse
When learning how to care for an individual with a disability or neurodiversity it is a common difficulty parents or individuals face is finding a way to afford and maintain services and supports to meet the individual’s needs. Utilizing government benefits is an invaluable tool from not just a financial, but also a healthcare and support perspective. There are three main categories of government benefits: Money, Medical, and Other (Housing and Food).
Generally, all programs and benefits have a standard requirement that the individual meet the disability criteria for Social Security. Having a disability itself, such as autism is not an automatic qualification for disability. For children under the age of 18, the Social Security Administration considers them disabled if they have a medically determinable physical or mental impairment, which includes an emotional or learning impairment, that results in marked and severe functional limitations, and can be expected to result in death or that has lasted, or can be expected to last, for a continuous period of at least a year. For those over the age of 18, disabled means having a medically determinable physical or mental impairment, including emotional or learning impairments, which results in the inability to do any Substantial Gainful Activity, and can be expected to result in death or that has lasted, or can be expected to last, for a continuous period of at least a year.
If these benefits seem confusing, it is because they are. That is why Planning Across the Spectrum has decades of combined experience in providing neurodiverse benefit consulting services for individuals and families. Contact us for a free 30-minute complimentary consultation.
When it comes to Money:
The three main government neurodiverse benefits are Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), and the Disabled Adult Child (DAC) benefit. Navigating these programs can be challenging, especially considering that some programs are means-tested, meaning that they have income and asset limits that impact an individual’s eligibility. Check out our simplified SSI and SSDI comparison chart.
Generally, all programs and benefits have a standard requirement to meet the disability criteria for Social Security. For children under the age of 18, the Social Security Administration considers them disabled if they have a medically determinable physical or mental impairment, which includes emotional or learning impairments, that results in marked and severe functional limitations, and can be expected to result in death or that has lasted, or can be expected to last, for a continuous period of at least a year. For those over the age of 18, disabled means having a medically determinable physical or mental impairment, including emotional or learning impairments, which results in the inability to do any Substantial Gainful Activity, and can be expected to result in death or that has lasted, or can be expected to last, for a continuous period of at least a year.
Supplemental Security Income (SSI):
SSI is a means-tested benefit; it assesses eligibility based on income and assets. The requirements for SSI are extremely strict because the benefit is intended to meet the basic needs of individuals with disabilities, blind individuals, and the elderly, who may otherwise be unable to afford necessities like food and shelter. Some states also provide supplemental payments to SSI recipients. As mentioned in our detailed blog post, there is a complicated system for calculating income and assets, especially for children under the age of 18. Generally, the asset limit is rather straightforward, amounting to $2,000 for an individual or child, and $3,000 for a couple. For the purposes of SSI, assets or resources include cash, bank accounts, stocks, mutual funds, U.S. savings bonds, land, personal property, vehicles, life insurance, and anything else that can be converted to cash and used for food and shelter.
Turning to income under SSI, the conversation becomes a bit more challenging. There are four types of income at issue: earned, unearned, in-kind, and deemed income. Earned income includes wages, net earnings from self-employment, certain royalties, honoraria, and payments from sheltered workshops. Unearned income is income made from Social Security benefits, pensions, state disability payments, unemployment benefits, interest income, dividends, and cash from family and friends. In-kind income is shelter, food, or both, that an individual receives for free or for less than fair market value. Deemed income is a portion of the income of your spouse you live with, your parents you live with, or your sponsor (for aliens).
Deeming is especially problematic for children under the age of 18 who wish to receive SSI payments. When a disabled or blind child under 18 lives with their parent(s), or stepparent(s), and at least one parent does not receive SSI, some of the parents’ income may be counted as the child’s income in evaluating their SSI benefit. The income limits on what parents can earn in order for their young children to qualify for SSI also vary depending on the size of the household. In-kind income is also challenging for children living at home after turning 18. Since many children under the age of 18 live with their parents, this garners the expectation that their food and shelter costs will be covered by their parents. When an individual turns 18, the government expects them to pay their own way. This is commonly referred to as In-Kind Support and Maintenance (ISM), and, after turning 18, is viewed as a source of unearned income that can reduce their SSI benefit. A common way to handle the situation is to charge your child rent, establishing a rental agreement recognizing that your child pays for their own food and shelter expenses. Alternatively, if you are concerned about the taxable income you may receive from your child, you can determine your child’s fair share of household expenses to avoid any change in your tax status.
Social Security Disability Insurance (SSDI)
SSDI is an entitlement benefit; eligibility is typically based on the beneficiary’s work history and earnings. Payments are commonly available to individuals who have paid into the Social Security system for at least ten years, regardless of their current income and assets; however, children with disabilities may qualify based on the contributions of their parents. In fact, an individual only needs to have worked for 10 years if they developed a disability and would like to start collecting SSDI payments between the ages of 62 and 65. Essentially, the younger an individual is, the less work experience will be required to be eligible for SSDI. While SSDI is not a means-tested program, individuals cannot have their monthly income exceed the threshold for Substantial Gainful Activity. When an individual is eligible for SSDI benefits, they are also eligible for Medicare after a 24-month qualifying period.
Disabled Adult Child Benefit ( DAC )
Part of the SSDI program is the Disabled Adult Child benefit (DAC). A disabled adult child is an adult who had a medically diagnosable disability prior to reaching the age of 22. Such an individual does not need to have received SSI prior to receiving the DAC benefit; and the DAC can fully or partially replace any SSI benefit an individual is currently receiving. The DAC benefit is received by an individual whose parents worked and paid into the Social Security system and who either became disabled themselves and qualifies for SSDI, is retired and receiving Social Security benefits, or who has passed away. If the parent qualifies for SSDI, their child can receive an amount equal to half of the benefit received by their parent. Similarly, if the parent is retired, the child can receive an amount equal to half of the Social Security retirement benefit their parent receives. The DAC benefit increases to 75% of the parent’s full retirement benefit when the parent passes away. In accordance with SSDI, the DAC applies the same limitation on Substantial Gainful Activity. Learn more about our certified financial planning services for individuals and families.
Medical Healthcare and Services:
There are two main medical benefits, Medicaid, and Medicare. Although SSI is one of the most complex benefits, it is very important as many times SSI is a prerequisite and gateway to Medicaid. Medicaid pays for the majority non-medical services and supports that are necessarily in adulthood. Check out our Medicare and Medicaid Venn Diagram.
Medicaid is the nation’s primary health insurance program for individuals with disabilities. Medicaid is a federal and state program that helps provide funding for long term supports and services. The program is jointly funded, with matching state and federal funds, the federal government typically pays for approximately 60% of the program cost. While Medicaid is a federally administered program, the states retain the authority and flexibility necessary to provide services beyond those that are mandatory of all states. Mandatory benefits include inpatient and outpatient hospital services, physician services, laboratory and x-ray services, and home health services. Optional benefits may include coverage of speech, physical, and occupational therapies, case management, and prescription drug coverage. In many states, individuals who qualify for SSI will automatically qualify for Medicaid. Medicaid adds additional coverage to any existing insurance coverage, meaning that if an individual has private insurance, it must be used before the Medicaid benefits.
Many states also have Medicaid “Buy-in” Programs, which will allow an individual to work, and still maintain their coverage at a low or zero cost. Individuals can potentially work and maintain benefits more then might be thought at first, see our case study here.
Medicare is a health insurance program that some people with disabilities under the age of 65 can qualify for. The two main parts of Medicare are Part A and Part B. Medicare Part A is hospital insurance, which many individuals do not have to pay more for. Medicare Part B is medical insurance, which many individuals pay monthly premiums for. Medicare also consists of Part C, Medicare Advantage, and Part D, Medicare Prescription Drug Coverage.
Medicaid and Medicare together:
Medicare Dual Special Needs Plans (DSNP) are a special kind of health insurance plan that works as a combination type plan. These plans coordinate your health insurance needs between your state’s Medicaid program and Medicare to help provide you with the most value as an enrolled member. They do this by first connecting you with a case manager who acts as a point of contact and assists in helping you understand the plan and use the plan’s coverage. To put it simply, Dual Special Needs Plans are designed to be used often, for reasons we’ll discuss shortly. Because of this, these plans make care very accessible and have a focus on keeping you informed and empowered to take advantage of their benefits.
At Planning Across the Spectrum, we have specialists for the neurodiverse who specialize in helping you make the most of your Medicare and Medicaid and finding out the best plan.
Medicaid as Support:
At the state level, Medicaid Waivers are also popular; however, many of the programs have extensive waitlists. Medicaid Waivers are designed to help states provide services to their residents that would not usually be covered by Medicaid. All Medicaid Waivers are under the authority of Section 1115 and 1915 of the Social Security Act. The four types of waivers include Section 1115 Waivers, Section 1915(c) Waivers, Section 1915(b) Waivers, and Combined Section 1915(b) and 1915(c) Waivers.
Section 1115 Waivers are known as research and demonstration waivers, which allows states to temporarily test out new approaches to providing Medicaid care and financing to individuals. Section 1915(c) Waivers, or Home and Community-Based Services (HSBS) Waivers, allow states to provide home and community-based services to individuals in need of long-term care. This waiver can enable individuals to remain in their own home or community setting rather than being placed in an institutional facility while still receiving necessary care services. Section 1915(b) Waivers, or “Freedom of Choice Waivers,” allow states to provide care through managed care delivery systems. Such organizations contract with state Medicaid agencies, which can limit an individual’s ability to select their own providers because the organizations are paid from the state Medicaid fund rather than the individual or other insurance programs. The Combined Section 1915(b) and 1915(c) Waivers also allow states to provide home and community-based services to qualifying individuals through the use of contracted managed care organizations.
We know firsthand there is an immense amount of confusion and differences, between states, for example many times Connecticut is listed as a state without great services, However when you take all factors into account, such as wait lists, support needs, and quality of professionals that story can change dramatically. That is why we encourage everyone to look at their individual situation when considering potentially moving (or not moving).
While the availability and approved uses of Medicaid Waivers varies largely by state and type of waiver, many of the HCBS waivers can be used to cover expenses related to personal care services and supervision, home health aides, medical supplies and equipment, meal delivery services, respite care, counseling services, home and vehicle modifications (like ramps and safety rails), and transportation services, among others. At Planning Across the Spectrum, we have overviews of the Medicaid Waivers offered by state and we can help you determine which state, and which waivers, may be helpful for you.
Other Neurodiverse Government Benefits:
The federal Department of Housing and Urban Development (HUD), also provides programs that can help individuals with disabilities access adequate housing. For example, HUD offers housing assistance in the form of vouchers, including Certain Development Vouchers and Non-Elderly Disabled Vouchers, which can be used in a variety of housing developments, including Section 8 housing. Eligibility for such vouchers is also subject to strict income limitations, as it is designed to provide rental assistance for low-income families who may otherwise have difficulty obtaining accessible and affordable housing.
Individuals with disabilities may also be able to qualify for the Supplemental Nutrition Assistance Program (SNAP), which provides nutrition benefits to supplement the food budget for low-income families. If eligible for SNAP benefits, you will receive an Electronic Benefit Transfer (EBT) card, which is similar to a debit card; it is automatically loaded into your account and can be used to buy groceries at authorized food stores and retailers. The monthly benefit amount depends on the number of individuals within a household and may vary by state.
Means-Tested Benefits v. Entitlement Programs
A wide variety of government benefits, state programs, and federal welfare programs are subjected to a means test. This is sometimes correlated with the federal poverty line or an individual’s ability to engage in Substantial Gainful Activity. There is often also a limit on the assets of an individual in addition to restrictions on income. To make things a bit more complicated, there are limitations on what counts as income, what is excluded, and how to calculate income for children under the age of 18. For example, limited income, for the purposes of SSI, includes earnings from work, money received from Social Security benefits, workers compensation, unemployment benefits, the Department of Veterans Affairs, and friends and relatives, as well as any free food or shelter received.
Whereas means-tested benefits require strict income and asset limits, entitlement programs use a different method to determine eligibility. Typically, this can include an evaluation of an individual’s prior work history and their ability to engage in Substantial Gainful Activity. This means that while the individual can earn more than they could while receiving a means-tested benefit, like SSI, they still cannot engage in competitive employment, and must remain below the threshold for Substantial Gainful Activity.
Just Because Neurodiverse Benefits Are Available Doesn’t Mean You Need All of Them
Government benefits are designed to provide financial support for necessities and care services. They are also regularly evaluated to ensure that those receiving benefits maintain their eligibility from year-to-year. However, this does not mean that an individual needs to remain dependent on the benefits they currently receive. For example, some individuals only receive SSI until they are eligible for DAC, which might be a better fit for their needs. Further, some individuals outgrow all benefits depending on their ability to engage in Substantial Gainful Activity.
At Planning Across the Spectrum, we not only understand the complexity of government benefits and programs, but we also understand and can share with you how they will impact your individual financial situation. Contact us for specialized certified financial planning for the neurodiverse.