Aging out of the state’s public special education system, Nick [22, who has been diagnosed with autism] now stays at home, where his mother worries he is becoming more and more isolated and losing what he has learned. She wants to get him into adult programs funded by the state that would continue his training and maybe even set him up in a group home. […]
Nick is among nearly 20,000 disabled adults in Illinois who are on a waiting list to get into adult programs. Many of them come from families who don’t have a way to pay for home care, job coaches or other services.
Most wait an average of seven years before they are selected, despite a court order in 2011 that Illinois shrink the list and do other things to improve how it serves developmentally disabled adults.
One family told the Tribune they signed up their child when he was just 5 and he still did not get a spot when he turned 22 this year.
* IARF President & CEO Josh Evans…
Earlier today the Chicago Tribune published an article that serves as a painful and frustrating reminder to all Illinoisans – particularly those with disabilities and their families - that as a state we have failed to provide for the multi-generational needs of thousands of adults with intellectual/developmental disabilities that are on the state’s waiting list for community-based services and supports in a timely manner. With this publication on International Day of Persons with Disabilities, the Association and its members have a renewed focus in working to address the funding and structural issues that continue to serve as barriers to growing access to services and supports.
While we share the frustrations and concerns of so many individuals and families, recent efforts by the Illinois General Assembly and Governor Pritzker’s administration give the Association confidence that as a state we are now in a better place to begin to chip away at the inadequate funding plaguing our service array, as well as the statutory and regulatory barriers that have limited growth and flexibility in community-based services and supports.
We join organizations and individuals across Illinois in our collective efforts to advance the Fair Tax Constitutional Amendment, as this will not only lower taxes for the significant majority of Illinoisans, but will provide the resources that are necessary to address rate inadequacies, ensure a living wage for frontline staff, and expand the community-based service array and reduce the number of individuals on the waiting list for services.
IARF looks forward to working with Governor Pritzker and his leadership team, the General Assembly, the Arc of Illinois, and stakeholder partners towards eliminating barriers to individuals with intellectual/developmental disabilities accessing community-based services and supports.
*** UPDATE 1 *** From IDHS…
IDHS exists to support individuals with developmental disabilities and their families who are striving for independence, integration and inclusion in our society.
We have made strides in the last year, but far too many individuals with disabilities who “age out” of the school system are waiting for appropriate services because these services were neglected and hollowed out for years. Too many parents are still struggling to help support their adult children with complex needs.
Our administration is working every day, in good faith with individuals, families and stakeholders, to dramatically improve the current system of services and supports. One example is our commitment to revising the rate methodology for developmental disabilities (DD) rates and services to ensure that our rates adequately support our community providers. (Kathy Carmody of the Institute for Public Policy for People with Disabilities and Ronnie Cohn, the court monitor in the Ligas case, were members of the IDHS Rates Oversight Committee that developed recommendations on DD system rate changes.)
The leadership team at IDHS is committed to proving to parents that we honor their devotion to their children and that we will be strong partners with them. Some of our actions to date include:
* Committing by 2025 to ensuring that no individual remains on the PUNS list 5 years after their 18th birthday.
* Moving more than 600 individuals off the PUNS list this year.
* Revising the PUNS list to distinguish individuals planning for services from those actively seeking services. (While there are close to 20,000 individuals on the PUNS, roughly 7,000 are actively seeking services.)
* Establishing a dedicated email account for inquiries about PUNS status and expected selection dates: DHS.DDD.PUNS@illinois.gov.
* Forging a deeper partnership between the Divisions of Developmental Disabilities and the Rehabilitation Services so individuals leaving high school can immediately access vocational and employment supports.
* Submitting a federal Medicaid waiver amendment to increase wages for front-line workers to account for Illinois’ increased minimum wage, so community-based DD providers can recruit and retain strong teams.
* Investing unprecedented levels of state support for the community-based system of services serving people with intellectual and developmental disabilities.
Getting this right – eliminating prolonged delays for disability services – requires we marshal and manage significant resources that can support individuals with disabilities to live self-determined lives in their communities.
*** UPDATE 2 *** Kathy Carmody, CEO Institute on Public Policy for People with Disabilities…
Glad you ran the Tribune item from earlier today. As I stated in the article, our current situation is the result of decades-long neglect and under-funding in the I/DD community service delivery system. We are encouraged by the current administration’s commitment to community services and the inclusion of community providers and their representatives in efforts to improve and enhance the community system. The Institute looks forward to continuing to work with the leadership teams at DHS and HFS to find creative and cost-effective solutions to the challenges facing people with disabilities and their families.