Waiting List Initiative

	The Issue	The Latest Scoop	Action Steps	Lead Contacts	More Information

The Issue

5000 adults with developmental disabilities are waiting for critical services to help them live in the community. The average waiting period is 4 years.

2200 people with physical disabilities are waiting for support to live in the community through the Community Options Program. 2400 families that have a child with a severe disability are waiting for the Family Support Program. An additional 550 families are underserved within Family Support; Another 3000 families are estimated to be eligible but have not applied for services.

Across Wisconsin people with disabilities and family members are struggling because they receive inadequate or no services to assist them to live and work in the community. At times this has forced people to needlessly have to enter an institution or struggle to live in the community. Others rely on family members and may be at home without supports or daytime programming.

Inadequate wages and benefits for support workers intensifies the crisis in community living. Groups are forming across the state to address the waiting list and work force crises and bring them to the attention of policy makers and legislators.

On a national level, legislation has been introduced that may have an impact on waiting lists in Wisconsin. The Medicaid Community-Based Attendant Services and Support Act would remove the institutional bias in Medicaid funding and require community living as a funding option.

The Latest Scoop (Updated: 08/18/2008)

In his 2006 State of the State address Governor Doyle announced that he will expand Family Care statewide in five years. Since that announcement, the Department of Health and Family Services (DHFS) has been working with counties to make this happen. When Family Care is expanded statewide, it will eliminate waiting lists for individuals receiving adult services in Wisconsin.

Under this expansion initiative, counties have been forming regional Care Management Organizations (CMO’s). All but 12 counties have formed a CMO. Each CMO received a planning grant from DHFS to develop a plan on how they will implement Family Care in their region. Some of the regions will be ready to start Family Care by the end of this year or early next year.

Another issue being discussed within the Family Care redesign is how to include the principles of self-determination. Disability advocates would like to see Family Care include the concept of choice: choice in services, choice of providers, choice of living arrangement, choice of work, etc. In addition, advocates believe people should have control over their service budget. Including these concepts would allow people with disabilities the same experiences of freedom that most other Americans enjoy.

More information about the Family Care expansion is available from DHFS.

Action Steps

1. Become involved with your local planning committee. Ask your county human services agency what the planning process is in your area and how you can be involved. Work to assure that self-determination is a guiding principal in the development of your local CMO.
2. Speak with your Senator or Representative to make sure there is adequate funding for the Family Care expansion.
   
   

Lead Contacts

John Shaw
Wisconsin Council on Developmental Disabilities
201 W. Washington Avenue
Madison WI 53703-2796
Phone: Voice (608) 266-7707; TDD (608) 266-6660
Email: shawj2@dhfs.state.wi.us
Fax: (608) 267-3906

If you are not yet a member of the DAWN network, we hope that you will join us. Please register at http://www.dawninfo.org/ea/index.cfm.

More Information

• Issue alerts:
  
• Plain Talk on Waiting Lists
  
• Advocacy Resources:
  
• Background Papers:
  
  1. 2002 Year End Waiting List Numbers by County and Disability (In Word or PDF)
  2. 2002 Statewide Waiting List Information by Disability (In Word or PDF)
  3. Testimony given to the US Senate from Gov Dean of Vermont (PDF), July 2002
  4. Waiting List Issue Paper, presented at 2001: An Advocacy Odyssey, by Gerry Born, October 29, 2001
  5. Developmental Disability Waiting List Data, ARC-Wisconsin, April 2000
  6. Who can get community services: Waiting lists for Services in Wisconsin for People with Developmental Disabilities? by Aaron Bishop, June 2000
  7. The Wisconsin Council on Developmental Disabilities FY 2001-2003 State Plan on Developmental Disabilities: DD Waiting Lists, July 2000
  8. 2001-3 Waiting List/ Budget Priorities in Brief by the Coalition for Eliminating the Disability Waiting List in Wisconsin, November 2000
  9. Summary of Recent Exchanges between OCR, DHFS & Advocates regarding Olmstead, Medicaid Law, and Related Issues by the Wisconsin Survival Coalition, September 2000
  10. Letter to the Editor, Inter County Leader, Polk County Ledger, Amery Free Press, and Osceola Sun, by Lyne Schauls, May 2001.
  11. Editorial in Support of Home Care, Milwaukee Journal-Sentinel, August 2001
• Waiting in Wisconsin bulletins for 2004 (For 2003)
  1. Waiting in Wisconsin bulletin July 2004 (PDF) (Word) (Plain Text)
  2. Waiting in Wisconsin bulletin March 2004 (PDF) (Word) (Plain Text)
• Fiscal Information:
  
• Stories of Wisconsin's citizens with disabilities:
• Waiting for Family Support (2001) by Beth Swedeen
  [PDF Version] [Text Version]
• A five year wait for the Family Support Program, September 2000
  
  
• Links to relevant disability information: