CMS State Resource Guide on Self-Determination

The Center for Self-Determination (CSD) and the Centers for Medicare & Medicaid Services (CMS) are collaborating on an exciting project to advance the philosophy and implementation of self-determination. CSD/CMS are jointly developing a Resource Guide for State Medicaid Programs for State Medicaid Agencies and Medicaid programs serving all disabilities and aging.

The guide will include elements such as how self-determination can foster independent living in the community, best practices of efforts already incorporating self-determination, challenges States have faced in designing and implementing self-determination-focused support, and how self-determination can be funded under the Medicaid statutory and regulatory framework. Also included are sections on rethinking quality and income and asset development to overcome the effects of personal impoverishment. For a list of Advisors and draft Guide outline visit CSD.

International Conference on Self-Determination

All eyes are on Detroit next May as the city hosts its first-ever International Conference on Self-Determination. Planning for this monumental event began over a year ago and continues at a rapid pace.

"People from around the world will meet in Detroit to advance the full citizenship of all those who experience disabilities, young and old, to help end their segregation from society and launch new efforts to redefine supports and recovery, so that real control over their lives is determined by them with whatever assistance they may need," says Executive Director of the Center, Tom Nerney.

The event will be held at the Detroit Marriott Renaissance, May 27-29th, 2008. Several different organizations are already on board as participants including:

• Adapt
• Community Living Services, USA
• Community Living British Columbia
• Developmental Disabilities Institute at Wayne State University, Detroit, USA
• Disability Services Commission, Western Australia
• Inclusion International
• Independent Living Institute, Sweden
• Italian Independent Aid Service
• National Development Team, United Kingdom
• National Empowerment Center, Lawrence, MA USA
• World Institute on Disability

Conference topics include: Human Service System Change, the Work Imperative, Quality Lives, Structural Changes, Controlling Dollars, Research & Data, Legal & Ethical Issues and the Workforce Issue.

For up-to-date info visit the Center for Self-Determination website and click on conference logo. The conference link supplies promotional information for use in your agency or organization newsletter. Printable flyers are also available for wide distribution. Questions? Email info.icsd@gmail.com

For a great clip about the International Conference on Self-Determination visit http://www.youtube.com/watch?v=Uy-2GtUpYtk. This video was put together by Tiffany Devon, Public Relations Director at Community Living Services, Inc. in Wayne, Michigan.

State News

Florida

Next month at Florida Partners in Policymaking, Center Resource Guide Pat Carver will present the history and ramifications of the Self-Determination movement. Partners programs have been implemented nationally and internationally. More than 15,000 Partners graduates (250 from Florida since 1994) are part of a growing national and international network of community leaders serving on policy making committees, commissions, and boards at all levels of government. For core curriculum and other helpful resources visit Minnesota’s Governor’s Council on Developmental Disabilities.

Kentucky

October 2 in Louisville, Access, Quality, Consumer Choice brought together national experts in long term care policy, Kentucky policy makers, representatives from other states, advocates and consumers to continue forging Kentucky's vision of long term care.

Guest speakers included: Steve Gold, Disability Rights Attorney, Philadelphia, PA; Gene Coffey, National Senior Citizens Law Center Washington, D.C., and Center for Self-Determination Executive Director, Tom Nerney. Sponsors for "Access, Quality, Consumer Choice" were AARP Kentucky, Advocates for Reforming Medicaid Services, The ARC of Kentucky, Center for Accessible Living, Community Living Services, Kentucky Council on Developmental Disabilities and the Kentucky Equal Justice Center.

Montana

Tom Nerney kicked off the Montana Council on Developmental Disabilities conference, Charting Your Future: Self-Directed Services & Self-Determination with his keynote The Meaning of Freedom in Everyday Life on Sept 24 in Helena.

On September 25, Norman Kuntz and Emma Ver der Klift keynote message included Being Realistic Isn’t Realistic and on Sept 26 Resource Guide Pat Carver joined Montanans and ADAPT activists Bob Liston and Marsha Katz in a workshop about power and belief in oneself. Both Nerney and Carver facilitated sessions throughout the three days about self-determination. Sponsors of this successful learning event were the Montana Department of Public Health & Human Services; Rural Institute on Disabilities; Montana Advocacy Program and Montana Association of Community Disabilities Services.

Nevada

Center Resource Guide and Executive Director of the Arc Michigan Dohn Hoyle promoted Self-Determination Through Alternatives to Guardianship during the summer by presenting in several locations across the vast state of Nevada. Mary Bryant, Project Coordinator at University Center for Excellence in Developmental Disabilities at the University of Nevada, Reno joined Hoyle in advancing guardianship alternatives in Reno, Carson City, Winnemucca, Elko and Las Vegas. Some topics posed to the participants were "Why People Think Guardianship is Necessary" and "Why Avoid Guardianship."

Rhode Island

The annual meeting of the Rhode Island Developmental Disabilities Council was held October 12th & 13th, 2007. Designing a System to Support Self-Determination included CSD director Tom Nerney presenting three topics; 1) Rethinking Quality in Human Services, 2) Implementing Quality within Personal Budgets and 3) System Change Requirements. Nerney also led the discussion "Where does Rhode Island go from here?"

TEXAS

Kim Tope has been at the helm of the Self-Determination for Texas collaboration between Imagine Enterprises and the Center for Self-Determination for several years. After a recent training, Tope shared the following from Laurie Truesdell from REACH of Dallas "This training is not just any training. This training will change my life and others in the disability community. When I was younger, I think a lot of "professionals" had a closed definition of what independence meant...do everything yourself...don't depend on your parents. I never could live up to "their" definition. Through your training, you put a different spin on what independence means. I am really glad that the definition of independence is more open. I will be working on forming my circle of support. I know that I have the freedom to be in the "driver's seat" ; no matter who I decide to help me with my needs."

This training was presented by Vickie Vining and Jan Lampman, Center for Self-Determination Resource Guides. Closely linked to this Texas project is the business "Get A Life" owned and operated by Ricky Broussard. At the International Conference on Self-Determination May 27-29, 2008 Mr. Broussard will present as a part of new leadership developing around self-determination.

WYOMING

In Casper on October 10th at the pre-conference of the Wyoming Governor’s Planning Council on Developmental Disabilities MEGA 2007 event "The Music Within All of Us", Center Resource Guide Jan Lampman conducted a full-day symposium on Self Determination. Lampman's training always includes active participation. Here small groups worked on a hypothetical person's plan and budget. "It quickly became clear to the entire group that you can think of all sorts of wonderful ways for people to have meaningful things to do and ways to connect to relationships, if you think in terms of having a meaningful life rather than in terms of what will the system dollars cover," Lampman says about the day.

Updates and Announcements

3rd annual INCOME

The third annual INCOME - International Networking Conference On Micro Enterprise will launch from New Orleans on February 23, 2008. The "Conference INCOME" onboard the Carnival Cruise ship "Fantasy", is intended to refresh one's entrepreneurial state-of-mind through study of Micro Enterprise 101, Building & Growing Your Business, Strategic Administration and Transition-Aged Youth. For more info contact IncomeLinks

Nerney Appointed to Empowerment Center Board

The National Empowerment Center Inc (NEC) carries a message of recovery, empowerment, hope and healing to people who have been labeled with mental illness. NEC, a consumer/survivor/expatient-run organization believes recovery and empowerment are possible for each person. In August 2007, Center Executive Tom Nerney was appointed to the NEC Board of Directors.

Shiavo and Miller connection

Vanity Fair’s article Arthur Millers Missing Act, published in September, leads with "For all the public drama of Arthur Miller's career-his celebrated plays (including Death of a Salesman and The Crucible), his marriage to Marilyn Monroe, his social activism-one character was absent: the Down-syndrome child he deleted from his life"

The article looks at the price of that abandonment by Miller (often called the moralist of the past American century) while highlighting how his son Danny had found meaning and happiness in his life.

Another piece behind the Vanity Fair article is the initial connection with the Center for Self-Determination Alliance for Freedom April 2005 e-newsletter. In this issue of Alliance for Freedom News, the single story Tom Nerney calls for a serious conversation about America's obsession with denying the value of individuals with a disability. Nerney’s article surfaced when Vanity Fair did an internet search for information about Danny Miller. The reporter was then directed to individuals in Connecticut who know and love Danny.

Among those is Jean Bowen, a leading disability-rights advocate and Connecticut People First advisor. At the end of the Vanity Fair article Bowen said “The important part of the story is that Danny transcended his father's failures. He's made a life for himself; he is deeply valued and very, very loved. What a loss for Arthur Miller that he couldn't see how extraordinary his son is."

Detroit Editorial of Freedom

"People with disabilities are still in basic struggles for their basic freedom" says business and educational consultant Tom Watkins in an editorial carried by Gannet News Services. Watkins served as Michigan's state mental health director from 1986-90 and Michigan's state superintendent of schools from 2001-05. Check out Those with Disabilities Deserve Same Freedom to Choose as Everyone.

Closing Quote

"For many years I worked hard to acquire a position of authority and control. Only to learn that shortly after I was in control, I had to give it up. It was difficult to accept at the time, but turned out the best decision I’ve ever made"

- Jim Dehem CEO and President of Community Living Services when talking about self-determination and provider agencies.

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