If not now, when? If not us, who?
by Jim
I started my morning last Wednesday with a visit to KMAJ-AM radio in Topeka. Julie Smrha (Easter Seals Capper Foundation Marketing Coordinator and Marketing Partner) joined me to talk with radio host Jim Cates about the key findings of the Easter Seals Living with Autism Study. After that we spent another 40 minutes on the Topeka Talks with Deb Goodrich radio show.
That evening, we presented the key findings of the Easter Seals Living with Autism Study to more than 50 parents, educators, state legislators, Kansas Autism Task Force Members and interested community members at Easter Seals Capper Foundation in Topeka, Kansas.
This was the first of many Easter Seals Living with Autism Study community forums planned across the country, and our experience tells us there is great interest in the findings — a mother of a child with autism who coordinates an autism support group in western Kansas (Hays) drove about three hours to attend this forum. She told me it was important to her to know about this study and network with others attending. As I shared the study findings, individuals in attendance frequently nodded their heads in agreement. I asked if the findings fit their experiences, and they confirmed that they did indeed.
Margi Colston from the Autism Society of America joined us and shared her personal story of her son’s life with autism and the glaring need for supports and services. She also spoke about meeting with the Obama Transition Team along with Easter Seals and other national disability organizations. Bill Robinson, President of Autism Society of the Heartland shared some of the challenges his grandchild living with autism faces as well as his vision of the advocacy and family support efforts of this Kansas City-based group.
MassMutual SpecialCare planners Peter Dawson and Scott Hepler addressed parents’ concerns reported in the study and shared information about the tools and professional guidance available to plan for the future for children, adults and families with special needs.
I took the podium again after that and provided an autism advocacy update, including the Kansas Autism Task Force recommendations to the Kansas Legislature. Mike Wasmer, Founder of the Kansas Coalition for Autism Legislation (KCAL), introduced a powerful video that has been sent to each member of the Kansas Legislature. The video urges legislators to vote YES for S.B. 398, the Accessing Autism Services Bill. Named after the Wasmer’s 9-year-old daughter, “Kates Law” would require insurance carriers to cover the diagnosis and treatment for autism spectrum disorders in Kansas.
Debby O’Neill, Vice President of Programs and Services at Easter Seals Capper Foundation, was next. She shared information about the range of supports and services we provide for individuals with autism and their families. Debbie also provided copies of our Autism Resource Directory, featuring national, regional, state-wide and area county resources.
Everyone attending our Community Forum appeared to be energized by the presentations, interaction and data. Many expressed interest in becoming more engaged and involved — they want to build greater awareness, advocate for changes in attitudes and policies, and ensure that appropriate services are available and accessible. In this new year with new challenges and new opportunities, we all want this call to action for change from this study to result in individuals with autism to have the opportunity to live meaningful, purposeful lives.
If not now, when? If not us, who? Let’s make it happen and have a truly happy new year!
January 18th, 2009 at 1:38 pm
HELP!!! I have a 22/y/o severely autistic son who I can not find placement for. I can no longer care for him. His violent out bursts have bruised and bloodied not only himself but me! According to AL Medicaid he does not qualify for a medicaid waiver to help cover group home costs. I have written to the Governor and my Senators for help. Apparently their hand are tied and can only write letters.
It pains me to say this but I have to get this young man out of my house. I have another child (16y/o) who is suffereing greatly because of the actions of his older brother.
In addition I have had to give up my job to stay home and care for him. Which means I lost my health ins and life ins for me, my husband and youngest son. I have looked into having someone sit with him but they all want $10-$25 per hour and I worked in an elementary cafeteria making maybe $6. per hour I just can’t afford to pay someone. Not to mention the liability if and when he “flips out” and hurts them.
CAN ANYONE HELP ME??? I AM ABOUT TO SNAP.
WHAT CAN I DO?
January 14th, 2009 at 3:44 pm
Jim,
I enjoyed meeting many of the families in attendance as well as the other guests who spoke that evening. As you correctly said, the findings of the study are well known to families, but they have never had the research and data to show the rest of the world life as they know it. What a great study to use in sharing the message of life with autism and more broadly life with a disability.
Hopefully this will be a starting point for others who do not know much about life with disabilities to recognize, embrace and become comfortable with those differences.
Best regards,
Peter