Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.

-Me

Tuesday, July 10, 2007

All In A Question

11. Tell us why you would like to participate in the Partners in Policymaking program.

Navigating the system in regards to my son and his autism spectrum disorder has been challenging for my family and myself. My son receives SSI, has a county developmental disability social worker, goes to Occupational and Speech Therapy, has a play therapist, an IEP, and receives PCA services. Any services my family receives from county or federal resources were received after an intense application period. I reference the application process as a period because of the amount of time and involvement it requires from the caregivers of the child you are applying for.

I have thought many times in our journey to receive appropriate services that I have been lucky. I am lucky that I happened to find an early childhood autism specialist that knew of resources to help my family and wanted to help us apply for and receive them. I am lucky that I am a highly organized person. I am blessed to be handy with a pen and eager to write letter after letter to help achieve goals in regards to my son’s care and services. I am blessed to be literate and connected with so many people that help me understand special education and disability law.

I recognize that there are many families that are touched by developmental disabilities that are not this lucky. I have met these families. I see them every day where I live. I live in a lower income controlled community where many of the tenants actually receive disability or have children that receive SSI. I live with people who need so much more and have no idea how or where to get the help they need. These families are not blessed with the skill to compose a letter that eloquently states their need and why they believe they should be accommodated. They do not have the tools to hop on the Internet and research special education or disability law.

In the past year I have fought for appropriate special education services for my son. I enlisted the help of PACER in this fight. I feel fortunate to have been given the opportunity to ask for their personal help in my son’s educational plan. I also moved into a new town home and had to file a HUD complaint (based on reasonable accommodations for a tenant with a disability) and contract a lawyer to receive a duplicate key for my son’s PCA. I have fought for my son’s rights and my family’s rights. I believe it is my social responsibility to use the overwhelming amount of knowledge I have gained through helping my son to help other families.

Partners in Policymaking will be the program that will give me an understanding of the system that I do not currently have. Partners in Policymaking will equip me to be a vessel of change for the community.

I am called to help families that are touched by developmental disabilities. I recognize the need for strong advocates for vulnerable families and children. I can be that strong advocate, and I’m hoping that Partners in Policymaking will help me.

3 comments:

cesnh said...

Wow! Great answer!

Major Bedhead said...

Excellent. Really well put, Sarah.

If you haven't sent it yet, I would change it to ...challenging to my family and me (rather than myself). Also, I'd leave out lower in the lower in lower income controlled community. Income controlled is fine.

Axistive said...

Wow. Good luck to you. That's a fantastic organization.