I thought I would share an email (with her permission) from someone I met when I started working for the Council in 1992 as the Family Support Coordinator. She and I worked closely together to conduct legislative advocacy training for parents who were instrumental in getting the Family Support Act passed in the first year it was introduced in the legislature. I remember late one evening, we were at one of the hearings. She shared her story with the Representatives, several of whom cried when she provided her testimony. I believe Sheila played a huge part in the passage of that legislation.
Sheila has also answered every call I’ve made to her this year, asking for her to contact our Senator, Senator Blunt (he holds the key to DDC appropriations). Her father worked for him for over 20 years. She has been contacting his office to advocate on behalf of the Councils, as well as no cuts to Medicaid.
What other profession would offer such opportunities to get to know exceptional family members and self-advocates. Even when fighting for our very existence so we can continue to ensure those we care about, are able to live the lives they wish in their own homes, in the communities where they are valued for the individuals they are. Well worth the effort.
So glad to work with each of you.
Vicky Davidson, M.Ed.
Missouri Developmental Disabilities Council
1706 East Elm Street, P.O. Box 687
Jefferson City, MO 65102
(573) 751-8206 (Office)
CONFIDENTIALITY NOTICE: This e-mail communication and any attachments may contain confidential and privileged information for the use of the designated recipients named above. The designated recipients are prohibited from redisclosing this information to any other party without authorization and are required to destroy the information after its stated need has been fulfilled. If you are not the intended recipient, you are hereby notified that you have received this communication in error and that any review, disclosure, dissemination, distribution or copying of it or its contents is prohibited by federal and state law. If you have received this communication in error, please notify me immediately by telephone at 800.500.7878, and destroy all copies of this communication and any attachments.
Administration on Disabilities
330 C Street SW, Room 1006-B
Washington, DC 20201
Dear Commissioner Ortiz;
I hope my words can convey to you the positive impact the Missouri Development Disability Council has had on my entire family’s life. As a parent of a 30 year old son with significant disabilities, and a long-time advocate, I wish I had the literary capability to fully explain the need and importance of maintaining long-term funding, as well as the division between State Developmental Disabilities Council (MODDC), the Missouri Brain Injury Advisory Council (MBIAC) and the Missouri Statewide Council on Independent Living (MOSCIL).
There is so much of the past 30 years that I have forgotten because of the intense and long term stress of raising my son, Taylor; however, I will always remember the first time I met someone from the DD Council at a conference when he was only 3. That was a day that changed mine and family’s life forever! I truly can’t imagine where we would be without the trainings, education, and connections through the Council. As I sit here typing, trying to convey the need, tears are streaming down my face.
I learned a long time ago to share my story from my heart. I’ve attached a picture of Taylor with his favorite llama, Maverick. He is so much more than a diagnosis of autism and developmental and intellectual disabilities. So many have learned so much from him – he has truly changed people’s lives – I wish you could meet him! He’s non-verbal, and struggles to get his point across, yet makes friends with so many. He has a gorgeous beard, a huge heart and a noticeable love for people and animals. We’ve come so far from the days of him hitting his head with his fist over 300 times a day, not sleeping, throwing punches, spitting, and biting holes in his arms out of frustration.
Through the many trainings offered by the MODD Council, I quickly became involved in helping write legislation and testifying before the Missouri House and Senate. I was a consultant with the Department of Education and the Department of Mental Health. I helped start an organization that had the first private service coordination contract in the state working with families and teaching them how to navigate the very complex system that provided services for their children and families. This truly was an example of “teaching a person to fish”; what a great use of tax dollars.
The level of services my son needed required me often to create or change what was offered at a state or federal level, and I always worked to make it as fiscally responsible as possible. I knew that there were so many other families and individuals that were in a similar, difficult, and often desperate situation, and wanted to make every service dollar go as far as possible. My understanding of systems navigation and ability to train parents and professionals in the years to come would not have been possible without working with the DD Council. Taylor certainly would not have then or now the services needed.
The proposed cuts and consolidation between these three federally and often state mandated organizations would create unnecessary costs to the states and have an absolutely debilitating impact on individuals with disabilities and their families. With the state cuts and proposed cuts to Medicaid, these are truly dark and frightening days for families and individuals with disabilities. As the incidence of disabilities and demands for services continue to grow with the population, now more than ever, we need these separate councils to facilitate the most responsive and responsible way to expand and develop community resources and talents. Please, help us continue to make life a little easier for families and individuals with disabilities!
Sheila and Taylor Nichols
Colorado Developmental Disabilities Council
Ring the bells that still can ring. Forget your perfect offering. There is a crack in everything. That's how the light gets in. L. Cohen
1120 Lincoln Street, Suite 706
Denver, CO 80203-2117
OUR WEBSITE HAS VALUABLE INFORMATION: go to <www.coddc.org>.
The D.D. Council is 100% federally funded under the D.D. Assistance and Bill of Rights Act. Our goal is to achieve freedom and interdependence of persons with disabilities and their families to live typical lives. The Council's system change strategies include both advocacy in public policy efforts and grant making.