Within the State's new 1115 Waiver, Kentucky is launching a model self-determination demonstration that is the most innovative in the country. Designed to promote employment and self-employment as well as safe and affordable housing, this Waiver demonstration will be carried out under the experimental or demonstration section of the Social Security Act that permits states and the Centers for Medicare & Medicaid Services (CMS) to waive practices that would otherwise be prohibited. It represents a challenge never undertaken before to test whether or not typical Medicaid funding and service categories serve only to increase the costs of long term care without many discernable positive outcomes. The twin goals of this experimental demonstration changes what can be purchased with Medicaid in order to set high expectations and real cost effectiveness. It proposes a ceiling on personal allocations that is 5% less than typical service costs and it includes a fiscal incentive for promoting savings at the individual and family level.

It will cover all disabilities and aging. Using a complete self-determination foundation, including free choice of broker and fiscal agent, persons with disabilities enrolled in the Kentucky self-determination waiver will be able to:

• - Use Medicaid funds to supplement room and board in order to promote safe, affordable and personal housing in regular homes, apartments or condos
• - Use Medicaid funds to begin to capitalize a micro-enterprise or tiny business
• – Pay employers directly for any needed assistance
• – Pursue post secondary training and education
• – Purchase the means of transportation including cars, accessible vans etc.
• – Purchase necessary communications and/or mobility technology
• – Use one half of any money saved for critical one-time purchases

It seems only a short while ago that Center Director, Tom Nerney, met with Kentucky Governor Ernie Fletcher in a meeting set up by the Secretary of the Cabinet for Health and Family services and requested by advocate Glenna Taylor and Patty Dempsey, ARC Director of Kentucky. Following this positive half-hour meeting, another longer meeting took place with key state officials led by Mark Birdwhistell (now Secretary of the Cabinet for Health and Family Services) and attended by Medicaid Commissioner Staff. As a result the demonstration within Kentucky’s new 1115 Waiver was developed and planning is now beginning. Some issues will differ depending on type of disability and age and certainly the allocations available to develop personal budgets will vary. But, this approach narrows the focus of public spending to control of one’s home (when the person does not live in a family home), long term relationships, community connections, and, for those of working age, the production of income,

A 24 person stakeholder group has been created and it is co-chaired by Deborah Anderson from the state office and Pat Seybold, Director of the Kentucky Developmental Disabilities Council. Both the Council and the Kentucky P & A, directed by Maureen Fitzgerald, have offered to support this important endeavor.

While this demonstration holds the potential for important reforms to the Medicaid program it is fraught with danger. It requires an unprecedented degree of cooperation and trust between the advocacy community and the state. Similar attempts in the past have resulted in critical compromises and failures. As this project begins it is hoped that Kentucky will lead the nation in re-thinking the purpose of public funding for individuals with disabilities based on high expectations, increased quality and better use of a rapidly dwindling supply of public dollars.

As a result of the retreat, Deborah Crowley joined the Center professional staff as a Special Assistant to Executive Director Tom Nerney. Deborah brings to the Center over 15 years of systems change and advocacy experience. Currently she is the President of the Board of Directors of Louisiana's Protection and Advocacy Agency and formerly the Executive Director of Family Helping Families of Greater Baton Rouge and Louisiana Self-Advocacy Project advisor.

- In preparation for the near term implementation of "Consumer-Directed Natural Supports Enhancement Services" within a current Home and Community-Based Services (HCBS) Waiver, and two new waivers Georgia-s Department of Human Resources is preparing, the Center recently completed a six month series of self-determination trainings. Funded through the Georgia Governor's Council on Developmental Disabilities and headed by Center Resource Guide Dennis Harkins in concert with Georgia DHR and DD Council, the primary audience for this training were families and support coordinators.

The Center also made presentations on Self-Determination at a statewide provider conference, to a graduate reunion of Georgia-s Partners in Policymaking, and to a statewide conference in Savannah focused on community connections and direct support professionals. Georgia-s Division of MHDDAD is making significant strides towards the implementation of self-determination within Georgia's state system. The working relationship between the Division and the Georgia DD Council in this regard has been an excellent example of how the resources and responsibilities of a state developmental disabilities services agency and a Governor-s DD Council can blend effectively to work towards systems change based upon self-determination.

-The Self Determination for Texas Project is hosting a 'Mini-Immersion' project conference to continue regional and state work on increasing Self Determination for Texans with disabilities on March 8 & 9, 2006

The conference will assist project regions develop road maps to sustain efforts and have more opportunities for self-determination in Texas. Among the key players in the Immersion Learning will be Texas' Policy Team for Self-Determination. Tom Nerney, Vickie Vining, Dennis Harkins, Kathy Harris and Cori DiBiase from the Center for Self-Determination will be providing resource guidance. The project is operated by Imagine Enterprises and the Center for Self-Determination and is funded by a grant from the Texas Developmental Disabilities Council.

"It is risk-takers who inspire and lead."