While special education services are an entitlement, adult services are based on eligibility and availability of funding. If you are eligible and funding is available, services can be accessed. In the adult developmental disabilities system, Medicaid is the key to services. Medicaid pays for adult services.
This is a list 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 a PUNS (Illinois Prioritization of Urgency of Need for Services) form has been completed for your child with the Independent Service Coordination Agency in your area and update it annually.
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, is your friend, your advocate, and your voice when it comes to securing funding, insurance, and access to services and programs. To find your ISC agency, go to: www.dhs.state.il.us/page.aspx?module=12&officetype=&county or call Illinois Life Span at 1-800-588-7002. You can also call DHS at 1-888-DD-PLANS.
For more information on PUNS go to www.dhs.state.il.us/page.aspx?item=47620 or www.dhs.state.il.us/page.aspx?item=32444 or download “PUNS: The Basics” at www.familyvoicesillinois.org/wp-content/uploads/2012/06/PUNS-The-Basics-August-2017.pdf.
2) Develop a strong Transition Plan in your child’s IEP, starting at age 14 ½.
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. For more information go to www.illinoislifespan.org/toolbox-transition/ or www.parentcenterhub.org/transitionadult/.
3) Complete financial planning and set up a Special Needs Trust by age 12 if possible.
Guardianship: At age 18 a person is considered legally competent to make his/her own decisions unless a guardian is appointed. 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 needs help making decisions about finances and/or medical care, it is imperative that you obtain guardianship so that you have the legal right to make decisions on behalf of the person with a disability. This must be done through the court system where a judge will determine if guardianship can and should be granted. You can apply for different kinds of guardianship, including Guardianship of the Person, which will enable you to make decisions about your child’s activities, education, services, medical care, residential placement, or other choices affecting your child’s care; or Guardianship of the Estate, which will give you the right to manage your child’s property and finances. For more information go to: https://www2.illinois.gov/sites/gac/OSG/Documents/GuideAdultGuardianship2011.pdf.
Special Needs Trust: This allows an individual with a disability to receive lawsuit settlements, gifts and other funds while retaining eligibility for government programs such as Medicaid, Medicare, SSI, and SSDI (If there are assets in your child’s name over a certain amount, he/she may not be eligible for government funded services and supports). A Special Needs Trust is not designed to provide basic support, but to pay for things like education, recreation, counseling, and medical attention. A good explanation can be found at: https://specialneedsanswers.com/what-is-a-special-needs-trust-13601.
Consider opening an ABLE Account: The Achieving a Better Life Experience Act (ABLE) allows individuals with disabilities and their families to save for many daily, disability-related expenses on a tax-deferred basis, without limiting their ability to benefit from SSI, Medicaid and other federal programs. For more information go to: www.savewithable.com
4) Apply for SSI (Supplemental Security Income).
You can apply for SSI during the month your child turns 18. At this time the child will be looked at as a single individual with a disability regardless of his/her parents’ income or assets. For more information, go to: www.ssa.gov/ssi/.
To find your local Social Security office, go to https://secure.ssa.gov/ICON/main.jsp. To schedule an appointment with your local office, you can call 1-800-772-1213.
5) Apply for Medicaid health insurance.
Medicaid is the state insurance program for low-income individuals and for children and adults with disabilities. Most people with disabilities apply shortly after applying for SSI benefits at age 18. You can obtain an application for Medicaid from the Illinois Department of Human Services. You can apply online, print a paper application, or find your local Family Community Resource Center (Public Aid Office) by going to: www.dhs.state.il.us/page.aspx?item=33698. It is very important to apply for Medicaid because Medicaid is the key to receiving adult services in Illinois.
What about Medicare? Medicare, a federal program, covers people over age 65, certain people with disabilities of any age, and some children and youth with special needs who are the children of parents who are retired, disabled, or deceased. People qualify if they or their spouse have 40 or more quarters (10 years) of Medicare-covered employment. If eligible, your child can receive both Medicaid and Medicare. Additional information can be found at: www.ssa.gov/benefits/medicare/.
6) Apply for Vocational Rehabilitation services from DHS/DRS. Inquire about the DRS Home Services Program DHS-4243.
The Division of Rehabilitative Services (DRS) is a division of the Department of Human Services. Vocational Rehab 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. For more information on Vocational Rehab or to find a local office, visit: https://www.dhs.state.il.us/page.aspx?item=29737.
The 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. For more information on home-based services or to find a local office, visit: https://www.dhs.state.il.us/page.aspx?item=29738.
7) Check out all health insurance options that may be possible (including continuing on private insurance in addition to Medicaid as well as Medicare).
As of September 2010, young adults up to age 26 are able to stay on their parents’ health insurance. 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 mental retardation or physical handicap and become so prior to age 19. Check with your insurance carrier for details and the necessary forms to complete.