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Calls to Action

Illinois Housing and Community Living

Illinois operates Medicaid home and community-based (HCBS) waivers to serve people with developmental disabilities, including autism. These HCBS programs along with affordable housing services help Illinois residents with autism live fulfilling lives in the community.
April 10, 2015

Read below for recent news and updates about Illinois' housing and community living programs...

NEW! We hosted a webinar on Friday April 10th regarding the latest budget developments and what advocates can do to help expand – not cut – critical housing and community living programs serving people with autism in Illinois.

View the slides here and watch the full recording here

March 19 - Current budget proposals will significantly impact families and individuals affected by autism.

What is this about?

The availability of housing and community supports – including housing vouchers and developmental disability waiver slots – is directly tied to the amount of money budgeted by the legislature for each fiscal year (FY). The amount of money for these programs also determines whether or not service budgets are capped and how much providers can be reimbursed.

The legislature will decide how much is budgeted – or appropriated – for all of the programs serving people with autism, including the developmental disabilities waiver.

What is the problem?

The State of Illinois is facing financial shortages for FY 2015 (7/1/14-6/30/15) and FY 2016 (7/1/15-6/30/16):

  • $1.5 billion shortfall in FY15
  • $6 billion projected budget shortfall in FY16

The Illinois House and Senate Leadership are now proposing a 2.5% cut on all Medicaid programs to fill the gap that was left by their FY15 budget.

The Governor has announced his FY16 budget proposal. The proposed FY16 budget discontinues $17.8 million in non-Medicaid grant programs, including:

  • Best Buddies – ($1.0m)
  • Autism – ($4.3m)
  • Dental Services – ($986.8 thousand)
  • Epilepsy Grants – ($2.1m)
  • Respite Grants (including Group and Voucher) – ($8.9m)

In addition, the Supported Housing Services line item has been eliminated ($12.7m).

A cut would be detrimental in a state that already ranks within the five lowest for per person spending and quality of services for adults with disabilities.

While those who currently receive services cannot afford a rate cut, just as importantly money must be infused into the system so that Medicaid waiver capacity can be increased to serve some of the 22,000+ individuals who are on the PUNS (Prioritization for Urgency of Need for Services) waiting list, most of whom have been waiting for services for years.

How can you get involved?

Contact your local Senator or Representative and tell them that a 2.5% cut to Medicaid is unacceptable. To find your local Senator or Representative click here.

Be on the look out for other opportunities to advocate for additional funding and supports for individuals with autism through the Housing and Community Living Initiative that Autism Speaks is piloting in Illinois. 

Past Updates

Illinois has proposed changing its Medicaid waiver program for Home- and Community-Based Services (HCBS) in order to comply with a federal directive that prohibits services that "isolate" participants from the general community, and is inviting public reaction. The new rules will affect group homes, adult residential facilities, congregate living health facilities, and other settings.

This is a positive announcement as it forces states to make sure services are developed in a person-directed manner.

According to the state Department of Healthcare and Family Services, "HFS, in collaboration with the Illinois Departments of Aging (IDoA) and Human Services (DHS) and its Divisions of Developmental Disabilities (DDD) and Mental Health (DMH), is developing a Statewide Transition Plan as a result of the new Federal Home and Community-Based Services (HCBS) setting requirements effective March 17, 2014. Our Statewide Transition Plan must include the strategies to bring Illinois in full compliance with Federal rules by March 16, 2019.  The focus of the Plan will be compliance with the rules as they relate to the setting where a person may live and where he/she may receive services.."

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal through February 26. The plan and additional information are available at the Illinois Department of Healthcare and Family Services website HERE.

The State has scheduled Regional Public Listening Forums across the state where the public will have the opportunity to provide verbal and written comment. Comments should be submitted in written form, as well as voiced, in order to guarantee that they are recorded correctly. The public is encouraged to attend one of the Public Listening Forums listed below:

Thursday, January 29
10:30am - Noon
Parkland College Room W-115
2400 West Bradley Ave
Champaign, IL 61821

Thursday, January 29
3-4:30pm
EP!C
1913 West Townline Road
Peoria, IL 61612

Tuesday, February 3
1:30-3pm
Spring Ridge Senior Housing Community Room
6645 Fincham Drive
Rockford, IL 61109

Wednesday, February 4
10:30am - Noon
University of Illinois - Chicago
Disability, Health and Social Policy Building Auditorium, Room 166
1640 West Roosevelt Road
Chicago, IL 60608

Wednesday, February 4
2-3:30pm
The ARC
20901 LaGrange Rd, Suite 209
Frankfort, IL 60423

Tuesday, February 10
1-2:30pm
Rend Lake College Student Center
468 North Ken Gray Parkway
Ina, IL 62846

To submit written comments, send them by email to HFS.SWTransitionPlan@illinois.gov or mail comments to: 

Illinois Department of Healthcare and Family Services
Attn: Waiver Management
201 South Grand Ave East, 2nd Floor
Springfield, IL 62763

To submit comments by phone, call HFS at (217) 557-1868.

What’s the issue?

Early this year, the federal government issued new guidelines that may affect how you as an individual with autism or a caregiver will receive services through Medicaid. Illinois has proposed revising its Medicaid program to comply with the new regulations, which can affect services such as in-home or out-of-home residential support, day activities like supported employment or day habilitation, and other services like respite and family support. For more information about these rules, check out this replay from Autism Speaks’ live chat.

What can you do about it?

Illinois is now required to seek public input. This is your opportunity as an individual with autism or a caregiver to affect how these changes take place in your state.

The new rules were published in early 2014 by the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for administering the Medicaid program. The regulations outlined criteria for certain HCBS programs operated under specific Medicaid waiver programs.

Medicaid HCBS programs provide a variety of services and supports that individuals with autism need to live in the community. These programs offer an alternative to institutional services for people with disabilities who need ongoing support to meet their functional needs. All states operate HCBS programs that serve individuals with developmental disabilities, like autism, but these programs vary widely from state to state in terms of eligibility requirements and available services. More information about Medicaid HCBS is available online.

What do the new rules mean?

The rules require all Medicaid HCBS programs to allow individuals to be able to choose their services and have access to the community. In particular, states are prohibited from using HCBS funding for settings that isolate individuals from the broader community. This is an important new protection that could help individuals with autism live in settings that are more integrated with the community.

However, in implementing this new requirement, each state Medicaid office has significant discretion in determining whether a given setting results in “isolation.” As a result of the rules, states are beginning to 1) identify the type of settings that may no longer be in compliance with the new rules, and 2) develop plans on how they will change their HCBS programs.

CMS developed these rules over a number of years, and Autism Speaks has long been involved in helping ensure that the needs of the autism community were represented in the development of these new standards. Now that the rules are final, states are beginning to implement the necessary changes to their programs including identifying the type of settings that may no longer be in compliance with the new rule, and to develop plans that outline any changes they will make to their HCBS programs as a result.

What is Autism Speaks doing and what can autism families do?

During this process, states are required to obtain input from advocates and Autism Speaks urges each state to seek and incorporate stakeholders’ views on what constitutes isolating settings and how best to integrate individuals into the broader community. For more information on Autism Speaks’ position on Housing and Residential supports, view our position statement here. Individuals with autism and their family know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings.

Not sure what to say?

  • Medicaid policy can be very confusing and the state documents that describe programs aren’t written in a way that most people can understand. But that shouldn’t stop advocates from expressing their opinion. CMS has published two sets of exploratory questions to assist states in assessment of residential settings and non-residential HCBS settings, that advocates can use to help them think about their experiences and create their message to state officials.

If you are in a waiver program already, use these questions to tell about your experience. For example:

  • What was your experience planning your waiver services? Were you able to choose the services you wanted and get them where and how often you wanted?
  • Does the place where you get your services reflect your needs and preferences? Did you have options to choose from?

If you are not yet receiving waiver services (because you are on a waitlist or otherwise) but expect to be using waiver services in the future, use these questions to talk about what services will be important to you in the future. For example:

  • Do you want to be able to work? If not, what type of meaningful non-work activities would you like to be involved in?
  • Would you like to have roommates or live on your own? How often would you like to have visitors? What types of supports are necessary for you to live as independently as possible?