In my favorite science fiction TV series, Star Trek, the characters sometimes play a three-dimensional version of chess. In the Harry Potter books and movies (popular with my sons), the characters play quidditch, a game involving four different balls, one of which flies autonomously (It is now a real-life sport minus the ball with autonomous flight). Fictional authors seem to feel that real life is not complex enough to present enough of a challenge—at least not in the area of recreation. For those of us, who assist people with disabilities to obtain and manage their various government benefits, however, life is already quite complex enough, thank you. We are already operating on multiple planes, with multiple “balls” in the air in the manner of a juggler. A significant portion of my job involves helping families decipher the eligibility criteria for different kinds of government benefits and discerning whether or not their family member fits a particular set of criteria. Still, it can be confusing.
For example, when a person with a disability applies for Social Security disability benefits, s/he is applying simultaneously for all benefits for which s/he might be eligible, including Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Social Security Childhood Disability Benefits (CDB) aka “Disabled Adult Child” or “DAC” benefits. People, who have not worked enough, will not have enough credits to be eligible for SSDI, while people, who are working or who have worked, may be eligible for an SSDI benefit that is large enough to make them ineligible for SSI. Either way, the Social Security Administration is going to evaluate the applicant and send her/him a letter of rejection or acceptance for each benefit. The rejection letters generally come first, which can be confusing. Clients, who are assisting their 18-year-old son or daughter to apply for SSI benefits while knowing that their child has few or no work credits, are taken aback to receive a letter of denial—until they realize that the denial is for SSDI, which they never expected to get anyway. Similarly, clients with a work history and Social Security credits, who intend to apply for SSDI, are sometimes confused to receive an SSI rejection letter. It gets even more confusing when the applicant has met the Social Security criteria for disability since before her/his 22nd birthday and a parent has retired, making her/him concurrently eligible for CDB/DAC benefits.
Then, there is Medicaid. As discussed in my last blog, there are a number of eligibility criteria for Medicaid that vary by state and according to which eligibility category is most beneficial to the applicant. But eligibility for Medicaid as health insurance does not automatically guarantee eligibility for the Medicaid Waivers that directly fund disability services. Medicaid waivers are the conduits that allow Medicaid dollars to pay for support services that are not provided in a nursing facility, even if the eligibility criteria require a need for a “nursing-facility level” of care and support. The idea is that many people can and would prefer to receive that level of support in their own home or in a group home, rather than a large institution.
The applicant thus must also meet the criteria for whatever Medicaid waiver or other program to which they are applying. For example, in my home state of Illinois, we have Medicaid waivers for children with disabilities. However, the one that can provide funding for services to support a child with a developmental disability in her/his own family home is not currently adding new participants. So, children must have support needs that are high enough to merit placement in a group home or residential school setting to get funding. Alternatively, they must be medically fragile or technology-dependent, with fairly specific criteria for each.
Then there are waivers that fund services for adults with developmental disabilities. These are managed by the Department of Humans Services Developmental Disability Division. To qualify, the applicant must have either an IQ below 70 (indicating an intellectual disability) or demonstrated “marked” limitations in three out of six life-skills areas namely: self-care, communication, locomotion, learning, self-direction, and independent living. Both criteria must have been met before the age or 18, except if the diagnosis is autism spectrum disorder. Then, the cutoff is age 22. People, who cannot find evidence to support that their disability began before those ages, simply are not eligible for services under the Developmental Disability Medicaid waiver. Some exceptions will be made for genetic disabilities such as Down syndrome or birth-related trauma such as cerebral palsy.
Then there is specific waiver limited to people whose disability is due to brain injury. If you are an adult, whose disability is not “developmental” according to the age of onset and did not result from a brain injury, then you might still be eligible for the plain vanilla Illinois “Disability” waiver. Both the brain injury and disability waivers are managed by the Illinois Department of Human Service Division of Vocational Rehabilitation. Both require the person to score 29 or higher on the Determination of Need (DON) assessment, on which “0” indicates the lowest level of support needs and “100” the highest level of support needs. The DON looks at how much assistance (directional and physical) the person needs to accomplish specific activities of daily living, including both physical tasks such as eating and bathing as well as mental or executive functioning tasks, such as managing money. People, whose disability is physical and/or who are over 65 and who have a high enough DON score, can also access the Supportive Living waiver. Finally, there is a waiver for people who have HIV/AIDS and whose DON score indicates the need for a nursing-facility level of care.
The full roster of Home and Community Based Medicaid waivers for Illinois can be found here. Other states have their own Medicaid waivers, some of which are simple and broad, covering many categories of disability with one waiver and some of which, like those of Illinois, segregate applicants and require them to meet particular criteria, according to a specific category of disability. Helping your family member navigate the maze of criteria and documentation that are required to obtain public benefits can be as complicated as playing a game of 3D chess or quidditch. Admittedly, it is not as much fun. But the payoff is a lifetime of support for your loved one with a disability.