In the State of Illinois, by the time an individual with an IEP turns 14 ½, it is required that their school begins a process called Transition Planning. During Transition Planning, services that would benefit individuals with disabilities as they transition into adulthood are discussed. This process will be completed every year, at or near the time of their IEP, until the individual graduates or ages out. There may be a waitlist for some services an individual will need, and obtaining some services can be complicated or frustrating. Therefore it is essential that Transition Planning is thoroughly reviewed at the IEP every year. At ARC, the School Program MSW is available year-round to answer questions or assist with issues related to Transition Planning as they come up.
The most important thing a caregiver can do in transition planning is to put their loved one with a disability on the PUNS list. The PUNS list is considered the “gateway” to funding for services a caregiver may need for their loved one currently or in the future, such as respite care, adult day training services, or residential services. The amount of time an individual’s name stays on the list before being selected can vary greatly, but the wait for services can be quite long in general. For this reason, it is strongly recommended that an individual is registered as soon as possible by calling the PAS agency below for the county they live in. Once their name is placed on the list, the family will be contacted annually by a representative from their PAS agency to make any needed updates. Prairieland Service Coordination- 618- 288-1897 (Madison and St. Clair Counties) Central Illinois Service Access- 217-732-4731 (Macoupin, Calhoun, Jersey Counties).
*If you are having difficulty getting through to the above numbers, or you are unsure which PAS agency to use, you can call DHS at 1-888-337-5267
Community Day Services (formerly Developmental Training), or as they are commonly called, CDS programs, are programs based in the community that offers individuals with disabilities. This training helps the individuals to participate in tasks to help them stay mentally and physically active, spend time with peers, and, in some cases, receive physical and occupational therapies. CDS programs offer a safe, stimulating environment for an adult with disabilities for caregivers that must work during the day or have other engagements. While most CDS programs provide private pay options, this can become expensive. Many families rely on state or grant funding, acquired through being on the PUNS list, to provide this service. Once funding is obtained, the caregiver will work with a case manager to view and select a CDS program for their loved one.
Many families plan for their loved ones with a disability to remain living in their family home for as long as they can care for them. Sometimes, however, this is impossible for whatever reason, and 24-hour care outside the family home for their loved one becomes necessary. Residential services, or group homes, are 24-hour care facilities located in the community that provides family-style living options for adults with disabilities. Individuals that live in group homes participate in CDS programs during the week. Group homes also offer an array of opportunities for socialization and community outings. Family members are encouraged to call, visit, and take their loved one with a disability on outings or at home to stay for the weekend. They are also encouraged to participate in physicians and other appointments. However, if a family member cannot attend these things, the group home staff will take care of all appointments and report back to the family how they went. Funding for a group home is obtained through the PUNS list. When a family is considering a group home for their loved one, they will contact their PUNS coordinator to discuss options. At ARC, the School Program MSW can also assist in facilitating this process.
When an individual turns 18 in Illinois, they are legally considered an adult; this may lead to some issues for an individual with a disability who will have someone caring for them. To avoid problems with insurance, applying for services, and/or to make medical or financial decisions for their loved one with a disability, a caregiver may choose to apply for guardianship of a disabled adult. Applying for guardianship is a legal process that involves submitting paperwork, having a physician confirm that an individual is disabled, and a court date. Some families choose to secure the services of an attorney to assist with this process. However, this can become costly and is typically used in more complicated cases. It is possible to also file the paperwork on one’s own. To do this, the caregiver seeking guardianship should go to their county’s courthouse to request the paperwork. Most courthouses also have a legal library, in which questions can be answered. Once the paperwork is filed, the caregiver will be given a court date. Sometimes the individual with a disability must also attend. Guardian ad litem (an advocate) will be appointed for the individual with a disability, which involves a fee. There will also be a court fee. However, if your income falls below a certain level, you can apply to have these fees waived.
Some individuals with disabilities may receive social security benefits before they turn 18. Others do not. This typically depends on a family’s income. Once individuals turn 18, whether they have a legal guardian or do not have a legal guardian, they are eligible to apply for social security benefits (SSI). SSI provides a monthly monetary amount to supplement income from regular employment. A recipient of SSI may need a “representative payee” (usually a caregiver), who will assist them in spending the money in a way that benefits the individual with a disability. A payee will need to keep good records of how this money is spent.
To start the process of applying for social security, call 800-772-1213.
Like SSI, some individuals with disabilities receive Medicaid (state-funded medical care) before they turn 18. Others do not. Again, this typically depends on a family’s income. Once an individual with a disability turns 18, they are eligible to apply for Medicaid. Medicaid can help to offset the cost for medical and mental health services that may be needed. It can also assist in the price of medical supplies and/or medications.
There are several ways to apply for Medicaid:
Call 800-843-6154 to request paperwork.
Apply online at www.abe.illinois.gov
Call DHS at 833-2-FIND-HELP to locate the DHS office nearest to you and apply in person.