Are you a "System Shaker?"

iMatter Conference Article (2007)


Are you a “system shaker?” This was the question posed to all of the participants who attended the Community Options Second Annual iMatter Conference. This year’s iMatter Conference took place in the serene Santa Fe, New Mexico and focused on Medicare and Medicaid Service Initiatives throughout the country.

The conference began with an extraordinary Keynote Address by Michelle Lujan Grisham, Esq. Michelle was previously the Secretary of New Mexico’s Department of Health working under Governor Bill Richardson. Michelle’s opening address for the conference was not only refreshing but inspiring. Lined with humor and grace, Michelle challenged all of us to participate in a cultural revolution as it relates to our attitudes regarding individuals with disabilities. She challenged us to not only look at our vocabulary as it relates to individuals with disabilities but also focus on how disability affects each and every one of us as individuals.

Deborah Armstrong, PT, JD, Cabinet Secretary of the New Mexico Aging and Long Term Services Department addressed the Mi Via (My Way) path to self-direction initiative and the four 1915(c) waivers. The Mi Via program is to New Mexico as Real Life Choices is to New Jersey in that the participants of the program lead the way in designing a program and budget that works for them and no one else. Participants plan and purchase services, supports and goods, develop their plans and budgets, hire, train, terminate and decide on employee pay rates within a suggested range of rates. All of the services and support plans are designed to meet the functional, medical and social needs of the individual. Participants of the Mi Via program are able to purchase any traditional waiver serves and other self-designated goods and services.

Dr. Colleen Wieck, a long time friend of Community Options, addressed Parallels in Time which is a history of society’s attitudes and treatment of persons with developmental disabilities. Dr. Wieck is the Executive Director of the Minnesota Governor’s Council on Developmental Disabilities of the Department of Administration, a position she has held for the past 24 years. Dr. Wieck is the primary creator of Partners in Policymaking which is a leadership training program for adults with disabilities and parents of young children with developmental disabilities. She has worked on numerous public policy issues including deinstitutionalization, supported employment, family support, self-determination and education.

Secretary Alfredo Vigil, MD closed the first day of the conference with a presentation about his plethora of experience working with the people of New Mexico, specifically, individuals with developmental disabilities. Dr. Alfredo Vigil has 30 years of extensive clinical and management experience specializing in family medicine, geriatrics, emergency medicine and reproductive health issues. He has worked in private practice, community health centers, hospitals and other non-profit organizations. For the past five years, he was chief executive officer of El Centro Family Health, a non-profit primary care organization in Española. Governor Bill Richardson appointed Dr. Vigil in June 2007 to serve as secretary of the New Mexico Department of Health, the largest state agency. The Department of Health works with New Mexicans to prevent disease, prepare for health emergencies, promote sound health policy, protect vulnerable individuals and provide support and advocacy to individuals with disability.

Dr. Vigil posed one of the most important questions of the day. “Green or Red?” Which to those of us visiting New Mexico for the first time, this information was invaluable. The question of green or red relates to type of Chile you would like when ordering at a restaurant.

Needless to say, the first day of the conference was filled with insightful and innovative ways to continue to serve individuals with disabilities in our own states and how to gracefully “shake the system.”

After the first day of the conference came to a close, participants retreated back to their luxurious rooms or hit the pavement to take in as much of this beautiful downtown area as they could. From fine dining to exquisite art work in galleries all over the city, Santa Fe proved itself to be a utopia for all that are fortunate to live, visit, work and play in this fabulous city.

The second day of the conference began with an opening presentation by Sandra Barrett, the Assistant Director of the Division of Aging and Adult Services in the state of Arkansas. Mrs. Barrett focused on the past, present and future of the Cash and Counseling Program. Mrs. Barrett pointed out the essential elements of cash and counseling to be person centered planning for personal assistance, individual directed budgets that give that person hiring and budget authority, participant support including financial management and counseling services in addition to quality assurance and improvement systems. There are some expansion states involved with the Cash and Counseling Program and they are Pennsylvania, Rhode Island, Vermont, Washington and West Virginia.

Whoever made up the phrase, “save the best for last,” was not kidding. The Individual and Family Forum was last on the agenda of the iMatter Conference and this forum was moving, full of emotion and tears. Individuals supported through the Mi Via program in New Mexico talked about the benefits of the program and how having the opportunity to participate in the Mi Via program has completely improved the quality of their lives, dramatically. There were three family members on the forum that shared their struggles of trying to locate and identify services for their loved one with a disability in their respective states. Hearing these stories would turn anyone into an advocate. These were real and honest stories of triumph, hardship and the long struggle to find peace, safety and inclusion for the people they love the most in the world.

Walking away from the conference, all of us left asking ourselves the question, “what can I do?” Disability affects all of us either directly or indirectly. Whether you are a professional, parent, relative, public official, business owner, sister or brother, you can be an advocate. You can challenge your state government with your peers to make long term systems change. There is power in numbers – you do not stand alone in wanting to effect systems change within our state governments to advise on how to spend money wisely, implement changes in service delivery and demand the opening of more community homes in your local communities that promote inclusion to the individuals we support and not isolation in degrading and horrific state institutions.

While the question of “Green of Red” is a good one, a better question to ask yourself is “Are you a system shaker?” Are you willing to step out of your own comfort zone to advocate for individuals with disabilities? What are you willing to do so that individuals with disabilities, our brothers, sisters, friends, colleagues, sons and daughters can live their most independent, fulfilling life with dignity and grace?

Please stay tuned as the 3rd Annual iMatter Conference will take place in Nashville, TN in 2008.

Author -Jessica Guberman, Ph.D.