While special education services are an entitlement, adult services are based on eligibility and availability of funding. In the adult developmental disabilities system, Medicaid is the primary payment source for services. Medicaid waiver programs include home-based supports, employment and vocational supports, and group home or other residential options.
This is a checklist for families of teens and young adults with Down syndrome that is designed to help you in accessing adult services and supports in Illinois.
1) Make sure that your child is on the state waiting list, PUNS (Prioritization of Urgency of Need for Services).
To get on the PUNS list, you need to contact the Independent Service Coordination Agency for your area. The ISC agency, also known as a PAS (Pre-Admission Screening) agency, will contact you yearly to update your child's information. When your child is chosen from the waiting list, your ISC case worker will be your main point of contact for securing funding and accessing services and programs. To find your ISC agency, go to the IDHS office search tool .png "opens in new window")
and select the "Developmental Disability Services" office type and your county. You can also call Illinois Life Span at 800-588-7002 or DHS at 1-888-DD-PLANS (888-337-5267).
More Information
Understanding PUNS (Illinois Department of Human Services)
Government Benefits Fact Sheets (Scroll down to PUNS, The Basics, from The Arc of Illinois)
2) Develop a strong Transition Plan in your child’s IEP by the time your child is 16.
Illinois requires this planning in the IEP. An IEP transition plan that includes employment in the community, as well as a detailed strategy to address needed skills and the path to employment and independent living, is important.
More Information
Transition Toolbox (The Arc of Illinois)
Transition to Adulthood (Center for Parent Information & Resources)
3) Complete financial planning and set up a Special Needs Trust.
A Special Needs Trust allows an individual with a disability to receive lawsuit settlements, inherited assets, gifts, and other funds while retaining eligibility for low-income government programs such as Medicaid and Supplemental Security Income (SSI). A Special Needs Trust is not designed to provide basic support but to pay for education, recreation, counseling, medical care, and other services.
More Information
Special Needs Guides (Special Needs Answers)
ABLE accounts, made possible by the Achieving a Better Life Experience (ABLE) Act, allow individuals with disabilities to save without affecting their eligibility for SSI, Medicaid, and other need-based federal programs.
More Information
Save with ABLE (National ABLE Alliance)
4) Apply for Supplemental Security Income (SSI).
You can apply for SSI during the month your child turns 18. At that point, the Social Security Administration will consider only the individual's income and assets, not the income and assets of the parents.
More Information
Supplemental Security Income (Social Security Administration)
Local Office Locator (Social Security Administration) You can also call 800-772-1213.
5) Apply for Medicaid health insurance.
Medicaid is the state insurance program for low-income individuals and for children and adults with disabilities. Many people with disabilities apply shortly after applying for SSI benefits at age 18. You can apply for Medicaid online, submit a paper application, or apply at your local Department of Human Services (DHS) Family Community Resource Center. Applying for Medicaid is important because Medicaid is the key to receiving adult services in Illinois.
More Information
Apply for Benefits (Illinois Department of Human Services)
6) Apply for Vocational Rehabilitation services from DHS/DRS. Inquire about the DRS Home Services Program.
The Division of Rehabilitative Services (DRS) is a division of the Department of Human Services. Vocational Rehabilitation helps people with disabilities who want to get or keep a job. Be aware that there is limited funding, and an assessment is part of the process, with positive “employment outcomes” being the operative term.
More Information
Vocational Rehabilitation (Illinois Department of Human Services)
The DRS Home Services Program provides services to individuals with the most significant disabilities so they can remain in their home and live as independently as possible. This is a waiver program with specific criteria but does not involve being on a list. If the criteria are met, funds are available.
More Information
Home Services Program (Illinois Department of Human Services)
7) Consider all health insurance options.
As of September 2010, young adults are able to stay on a parent's health insurance plan up to age 26. In addition, under the “Continuation of Coverage for Severely Handicapped Children,” eligibility continues to any age for covered dependent children who are incapable of self-sustaining employment because of intellectual or physical disabilities which began prior to age 19. Check with your insurance carrier for details and the necessary forms to complete.
Individuals who become employed may be eligible for health insurance benefits through their employer. They could also consider a private plan through the ACA Health Insurance Marketplace . Individuals who are not working or who are not earning much money may qualify for Medicaid. Some individuals may also be eligible for Medicare based on their parents' or their own work records. If they are enrolled in SSDI, they should become eligible for Medicare after 2 years.
8) Plan for decision-making supports.
At age 18, your child will become an adult and will be considered responsible for making his/her own decisions unless other arrangements are put in place. The amount of assistance an individual may want or need will vary, but parents may wish to plan for the kind of supports which would be appropriate for their child. Families could consider some of the options and resources below.
Alternatives to Guardianship
In order to preserve the autonomy of the individual with a disability as much as possible, some families opt for more flexible methods of supporting their adult child in managing financial, health, and other decisions. These can range from identifying people the individual can turn to for assistance to formal power of attorney agreements.
Illinois passed the Supported Decision-Making Act, which went into effect on February 27, 2022. The law provides a mechanism for individuals with intellectual and developmental disabilities to designate a trusted person as an official "Supporter" who can assist with decision-making in a particular area. The agreement between them should be specified in a Supported Decision-Making form. Unlike Power of Attorney agreements, which allow an agent to act on an individual's behalf when the person is not present or is incapacitated, Supported Decision-Making agreements keep all authority for decisions in the hands of the individual with IDD, though he or she is free to rely on advice from designated Supporters.
Guardianship
Whether you decide to obtain guardianship for your child is an individual family decision that should be considered carefully. If your child is 18 years old and is unable to make decisions about finances, medical care, or other important matters, you can apply to your local Circuit Court for guardianship so that you have the legal right to make decisions on your child's behalf. If your child needs help in some areas but not others, alternatives to guardianship might be a better solution. A judge will determine if guardianship can and should be granted, but keep in mind that most forms of guardianship involve a loss of rights for the individual with a disability, such as the ability to marry, sign contracts, or vote.