The Connecting Point Volume 2 Issue 1
Date May 7, 2004

In This ISSUE:    

1) SSA State Chart of Work Incentive Activities
2) Understanding the Health-Care Needs and Experiences of People with Disabilities: Findings from a 2003 Survey
3) A New Fact Sheet on SCHIP Medical Cost Sharing for Children
4) A Family's Guide to the Child Welfare System
5) A New Book -   Reflections from a Different Journey:  What Adults with Disabilities Want All Parents to Know

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1) SSA State Chart of Work Incentive Activities
The chart found on this site contains links to information on initiatives, activities, and programs that can help people with disabilities who want to work. This includes information on the Ticket-to-Work Program, demonstration projects, cooperative agreements, and grants. Also, at the bottom of the chart there are links to resource information. For information on what is going on in your State, select the appropriate State link from the chart. http://www.socialsecurity.gov/work/Beneficiaries/activity.html

2) Understanding the Health-Care Needs and Experiences of People with Disabilities: Findings from a 2003 Survey People with disabilities were profiled in "My Name Is..." a video produced by Kaiser Family Foundation Senior Visiting Fellow and former ABC News Correspondent, Jackie Judd, and shown at a Dec ember 12 briefing to release the survey findings. It is available at http://www.kff.org/medicare/121203package.cfm   A quote from the video: Jessica, age 20, was diagnosed with dystonia - a progressive neuro-muscular disease - at age 12. Out-of-pocket expenses with Medicaid are several thousand dollars a year - and could increase when she turns 21 and is no longer a minor. "We're barely holding together, and there's like a thin layer of glue that's keeping everyone together. There's a bunch of cracks everywhere and they're all going to fall apart at some point."

3) A New Fact Sheet on SCHIP Medical Cost Sharing for Children
The Maternal and Child Health Policy Research Center is pleased to announce the availability of a new fact sheet on SCHIP, as part of our Program Impact Series. SCHIP Programs More Likely to Increase Children's Cost Sharing than Reduce Their Eligibility or Benefits to Control Costs. This fact sheet reports on the SCHIP program changes that states have made over the last 16 months in response to budget shortfalls. It examines policy changes in eligibility and enrollment, covered benefits, and cost-sharing requirements and is based on information from SCHIP directors in all 50 states with SCHIP programs in March 2004. It shows that despite difficult financial circumstances, nearly all states are protecting their SCHIP programs from cuts in eligibility and benefits but many are asking parents to contribute more to the cost of children's coverage, usually in the form of new or higher premiums. Importantly, also, some state shave taken steps to increase either enrollment or benefits. For a copy of this report, go to : http://www.mchpolicy.org/publications/documents/SCHIPFactSheetUpdate_000.pdf The Maternal and Child Health Policy Research Center is a health policy group that provides federal and state policymakers, public health officials, and provider and family organizations with analysis of financing and service delivery issues affecting children and adolescents. More information on SCHIP can be found at http://www.mchpolicy.org

4) A Family's Guide to the Child Welfare System Source: Child Welfare Resources - Retrieved April 21, 2004 A Family Guide to the Child Welfare System is a new comprehensive resource that answers many of the questions families face when they become involved with the child welfare system. The guide was developed collaboratively by Georgetown University Center for Child and Human Development, American Institutes for Research, Federation of Families for Children's Mental Health, Child Welfare League of America, and National Indian Child Welfare Association. To learn more about the guide and to download it in PDF format go to http://www.air.org/tapartnership/advisors/ChildWelfare/resources/Family_Guide.asp

5) A New Book -Reflections from a Different Journey:  What Adults with Disabilities Want All Parents to Know - Edited by Stanley D. Klein, Ph.D. and John D. Kemp ISBN:  007 - http://www.disabilitiesbooks.com/reflections/ [Note: this book is for purchase.  The URL listed above provides information about this book, as well as the ability to purchase it.  This publication is available anywhere books are sold.] Most parents of children with disabilities lack personal experience with adults with disabilities. Hearing from people who have lived the disability experience can provide all parents with essential information about the possibilities for their children. Reflections from a Different Journey includes forty inspiring and realistic essays written by successful adult role models who share what it is like to have grown up with a disability.
Each eloquently written essay is an insightful source of wisdom, inspiration, and emotional support as well as a rare glimpse inside the lives and minds of people with many different disabilities -- cerebral palsy, Down syndrome, autism, learning disabilities, deafness, blindness, mental illness, developmental disabilities, spina bifida, muscular dystrophy, attention deficit hyperactivity disorder, congenital amputation, and chronic health conditions.
In preparing their essays, each author was asked to write about something they wished their own parents had read or been told while they were growing up. The essays, which demonstrates that, first and foremost, people with disabilities are human beings with the same needs and desires as people without disabilities, are arranged thematically:
The foreword is written by Marlee Matlin, the Academy Awarding winning actress who is deaf. The after word is written by the book's co-editor, John D. Kemp, a successful attorney and advocate, who was born without arms and legs.
Brimming with a wealth of life-affirming lessons, Reflections from a Different Journey offers many specific suggestions for parents as well as older children with disabilities, family members, and the education and health care professionals who serve them.

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