IN THIS ISSUE:

CASE TIP: FUND RAISING EVENTS FOR CHILDREN ON SSI (From our archives 11.1.03)

1. HealthWatch Wisconsin Strategic Planning meeting for Southeastern Region, Monday, June 20, 2005, Milwaukee
2. Alert: Personal Care funding
3. National Down Syndrome Society 2005 National Conference: Imagine
4. Health & Health Care in Schools
5. Autism research: free public forum in Madison
6. Medicaid Fact Sheets from the Kaiser Family Foundation
7. Center for Disease Control addresses mental health
8. ARC: Paper Updates Data on Head Start's Comprehensive Services for Young Children with or at risk for Developing Disabilities
9. HealthWatch Updates and Contacts
10. Suggestions or Tips for the CKSN Update? Contact US!

CASE TIP: FUND RAISING EVENTS FOR CHILDREN ON SSI (From our archives 11.1.03)

Civic organizations, friends and churches often conduct fundraisers for children with special health care needs when an expensive item is needed or large expenses occur.

Medicaid eligibility for children, through SSI, is based on the income and assets of the family. If not properly established, these funds, which can be quite large, can be evaluated as income or assets available to the family. This can remove the child from SSI and Medicaid, causing the funds to be used to pay bills that Medicaid would have paid rather than providing the needed item or help.

Families should consult with their SSI worker or an attorney familiar with the rules when they establish an account so as to not adversely compromise the child's SSI eligibility. This account should be in place before the fundraiser occurs. Families should also consult with their SSI worker or an attorney concerning the process that the club should follow when paying the bills so the money is not given directly to the family and counts as income.

Staff at the following phone numbers can help:
Lawyer referral 1-800-362-9082 (for finding a qualified Attorney)
SSI 1-800-772-1213 (for question on SSI rules and policies)

1. HealthWatch Wisconsin Strategic Planning Meeting for Southeastern Region: June 20, Milwaukee

Join forces with your neighbors and colleagues from across Wisconsin to help plan for the development of HealthWatch Wisconsin, a new organization that will promote expanded access to health care and coverage for all! ABC for Health and CKF-WI have scheduled a series of strategic planning meetings across the state. We are interested in hearing from you on exactly how HealthWatch Wisconsin can best achieve its goals.

We invite you to join us at our next meeting:

Monday, June 20, 2005, 10:00am
Aurora Family Service Building
3200 W. Highland Boulevard
Milwaukee, WI

For more information please contact Annie Trimberger at ABC for Health (atrimberger@safetyweb.org). You may also contact: Brad Holman, Children's Hospital of Wisconsin, 414.266.3189, bholman@chw.org , or Tracy Wymelenberg: Community Advocates, Inc., 4906 W. Fond du Lac Ave. Milwaukee WI 53216, 414-449-4777, Fax 414-449-4775, tracyw@communityadvocates.net

Additional strategic planning meetings:

For information on times and locations, please see www.healthwatchwisconsin.org

2. Alert: Personal Care Funding

Medicaid personal care services are set to be cut in the next biennial state budget. The governor proposed a $10 million cut in his budget. Recently the Joint Finance Committee of the legislature approved that cut and added an additional cut of over $6.8 million. These cuts are being proposed at a time when the governor and the legislature are expecting to relocate hundreds of people from nursing homes into the community.
Personal care services will be needed by these folks and others already in the community in order to remain in their homes.

For information about these cuts, read a position paper with talking by the Wisconsin Personal Services Association (WPSA) at:
www.dawninfo.org/advocacy/issues/medicaid/wpsa.pdf. For more information contact Nancy Anderson of WPSA at: 608-242-8335 ext. 1328.
Additionally, the Fiscal Bureau issued a paper on this topic and that can be read at:
www.legis.state.wi.us/lfb/2005-07budget/BudgetPapers/388.pdf.

Contact your legislators and members of Joint Finance by the end of the week and let them know how this is a critical service in the community.
To find out who your legislators are go to:
http://165.189.139.210/WAML/. You can call your legislator through the legislative hotline and leave a message. If you live in the Madison area call 608-266-9960, otherwise call toll-free at 1-800-362-9472.

3. National Down Syndrome Society 2005 National Conference: Imagine
When: July 7-10, 2005
Where: Chicago, IL

The National Down Syndrome Society 2005 National Conference: Imagine, will bring together parents, family members, professionals, teens, and adults with Down Syndrome for education, networking, celebration, and more.

Attendees will learn best practices in education, health care, employment, community living, and inclusion; learn from and meet experts from around the country; find out about the newest products, programs, and services; acquire the most current information on education, research, and advocacy; learn about resources for babies, children, adolescents, and adults with Down syndrome; meet and network with hundreds of affiliate leaders from across the country; and more.

4. Health & Health Care in Schools is an electronic journal published with support from The Robert Wood Johnson Foundation by The Center for Health and Health Care in Schools, School of Public Health and Health Services, The George Washington University Medical Center, 1350 Connecticut Avenue, NW, #505, Washington, DC 20036 http://www.healthinschools.org/ejournal/ejournal.htm

5. Autism Research: Free public forum in Madison

The Madison chapter of the Autism Society of America announces public forum on current directions in autism research:

Sunday, June 26
6:30-8:00pm
Monona Terrace Convention Center, Madison

The Madison chapter of the Autism Society of America and the American Society for Neurochemistry will present a public forum based on current directions in autism research.

The forum is free and open to anyone interested in learning about current research on autism. Featured speakers:

Dr. Carlos Pardo, Assistant Professor of Neurology and Pathology at The Johns Hopkins University School of Medicine, Baltimore, will discuss his research on brain inflammation in autism.

Dr. Lisa Boulanger, Assistant Professor of Biology at the University of California San Diego, conducts research on immune system proteins in normal brain development and possible implications for autism.

The forum will include a panel discussion and audience questions.

Please register for this free forum at: autismforum@earthlink.net

For more information contact: Nancy Alar, Vice President, Madison area chapter, Autism Society of America. Email: nalar@tds.net Phone: (608) 222-4378

6. Medicaid fact sheets from the Kaiser Family Foundation

Medicare and Medicaid provide health coverage and long-term care services to roughly one-third of the 53 million people with cognitive, developmental, physical, and mental disabilities. Navigating Medicare and Medicaid, 2005: A Resource Guide for People with Disabilities, Their Families, and Their Advocates explains the critical role the two programs play in the lives of people with disabilities. The guide is intended to be understandable to people who are completely unfamiliar with Medicare and/or Medicaid.

The program rules for Medicare and Medicaid with regard to work are complex. Recently, Congress has enacted additional legislation to remove more of the disincentives to working and to continuing to receive health care coverage through these two programs. Keeping Medicare and Medicaid When You Work, 2005: A Resource Guide for People with Disabilities, Their Families, and Their Advocates explains many of the complex issues and policies that can be used to help people with disabilities to keep their health coverage and seek employment

Financing long-term care for the nearly 10 million Americans who need services and support to assist them in life's daily activities continues to be a challenge. While Medicaid is the nation's major source of financing for long-term care services, paying for over 40 percent of total long-term care, its role is not well understood. A new fact sheet, Medicaid's Role in Long-Term Care: Q & A, provides basic information on Medicaid's role for those with long-term care needs.

7. CDC and mental health

The Centers for Disease Control and Prevention, long the nation's premier health agency, has started to embrace a subject it used to ignore: mental health, says a report in the Atlanta Journal Constitution.
The Atlanta-based CDC hasn't announced any major mental health initiatives. But as society has become more comfortable talking about depression, anxiety and bipolar disorder, the agency has gradually increased its attention to such conditions, studying ways to prevent them and assessing how they interact with major killers such as heart disease, cancer, diabetes and AIDS. To read the complete article: http://www.ajc.com/health/content/health/0505/30cdcmental.html

8. The Arc of the United States

Paper Updates Data on Head Start's Comprehensive Services for Young Children with or at risk for Developing Disabilities
Preparing for Success: How Head Start Helps Children with Disabilities and Their Families details the requirements that Head Start grantees must meet to serve children with disabilities and provides data on how grantees are meeting these requirements. The paper, a joint venture between the Center for Law and Social Policy and Easter Seals, updates data from a 2003 paper of the same title. Topics include (1) seeking out children with disabilities or children who are at risk for developing disabilities to provide them with Head Start services; (2) collaborating and coordinating with other education, health, and social service agencies in the delivery of services to children with disabilities; (3) providing comprehensive services that assess and address the needs of children with disabilities and their families; and (4) training service providers to effectively address the educational and other needs of children with disabilities, as well as providing technical assistance to ensure ongoing effective service. The paper is available at http://www.clasp.org/publications/hs_disabilities_updated.pdf.

9. Regional HealthWatch Committees:

If you are interested in joining your regional HealthWatch committee, or want more information about their work, please contact the following people:

Southern Region: Maureen Fitzgerald, ABC for Health, Inc., 608.261.6939 ext 218,
Next HealthWatch Meeting: Monday, July 11.
9:00-11:00am: HealthWatch Meeting
11:00-1:00pm: CKSN Training: Family Support 360 Project
Harambee Center, 2202 S. Park Street, Madison.
Lunch included. Please RSVP by June 30, 2005

Southeastern Region: Brad Holman, Children's Hospital of Wisconsin, 414.266.3189, bholman@chw.org

Next HealthWatch (CHASE) Meeting: June 16, 2005 11:30-1:30
Guest speaker: Barry Thomet from Rogers Memorial Hospital
Location: ARC of Milwaukee
7203 W. Center St., Wauwatosa, WI

Additional summer meetings in the Southeastern Region:
Special meeting: Wednesday, July 13, 11:30-1:00
Guest Speaker: Teresa Ahlers, Infant Mental Health
Children's Hospital of Wisconsin

Thursday, July 21, 11:30-1:30, ARC of Milwaukee
Thursday, August 18, 11:30-1:30, ARC of Milwaukee

Northern Region: Deb Blackstone, Family Resource Connection, 715.361.2890 dblacks@shsmh.org
Next HealthWatch Meeting: August 9, 10:00-12noon
Topic: mental health coverage and services
Rhinelander, Riverside Clinic Conference Room 1

Northeastern Region: Steve Gerczak, St. Vincent Hospital, 920.433.8154, sgerczak@stvgb.org
Next HealthWatch Meeting: Thursday, July 14, 9:00-11:00AM
Bosco Hall, Green Bay Diocese. Topic: Childhood mental health access issues

Western Region: Rose Marsh, Chippewa County Dept of Public Health, 1-800-400-3678, rmarsh@co.chippewa.wi.us
Next HealthWatch Meeting: September 13, 10:45-12:00noon,
Room 121, Chippewa County Court House, 711 N. Bridge St., Chippewa Falls, WI

10. SUGGESTIONS OR TIPS FOR THE UPDATE? CONTACT US!

We need your help to develop content and tips for our CKSN Update. Please let us know about your ideas or success stories.

The CKSN Update is a bi-weekly electronic newsletter of the Covering Kids with Special Needs project that ABC for Health, Inc. is implementing with its partners, the Title V Children with Special Needs Regional Centers and Family Voices - Wisconsin. If you
would like to submit news and information in future CKSN Updates, please send it to the attention of Maureen Fitzgerald. All submissions should be limited to 150 words.

ABC for Health is a Wisconsin-based, nonprofit public interest law firm dedicated to linking children and families, particularly those with special health care needs, to health care benefits and services. ABC for Health's mission is to provide information,
advocacy tools, legal services and expert support needed to obtain, maintain and finance health care coverage and services.