Disability Policy Seminar- day THREE and Hill visits!

Disability Policy Seminar
April 29, 2009
Day three- hill visits

Today I visited Ohio House of Representatives staff members from Mary Jo Kilroy and Tim Ryan’s offices. We spoke mostly about the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) which (I am ashamed to admit that I didn’t know this) funds the UCCEDD’s. We had such a great combination of perspectives including parents, a clinic coordinator, a physician and me, a trainee!

A photo outside the office of Ohio Representative, Mary Jo Kilroy

I was able to talk to one representative about the benefits of the LEND traineeship from a trainee perspective. I told her how I feel more prepared than my non-LEND trainee classmates to enter the field as a pediatric PT because of my additional clinical experience but more importantly my knowledge of the systems, resources, funding options for families and the other disciplines involved in the child and family’s life. I think she liked what I had to say because I saw her take some notes. And I tried to get in that training programs ultimately save the system money because clinicians are (hopefully) more knowledgeable, efficient and well-prepared. She conveyed that the Representative she works with is in support of the act. Maybe this team will have some tools to convince fellow representatives to support the DD Act

Resonse to news article: Patient with Down's syndrome starves in hospital

Link to article: http://www.guardian.co.uk/society/2009/jan/09/patient-starves-nhs

Global health is kind of a new interest of mine since I returned from Mexico. I found this article pretty shocking.

The first excerpt, about Martin Ryan reminded me of some of the children I saw in Mexico with evident feeding tube needs. I spent time at two different schools, one facility which strongly advocated for fitting a child with feeding difficulties or significant weight loss with a feeding tube and teaching the family to care for it. The other school did not consider feeding tubes to be an option because they felt the staff at the school and the parents would not be able to care for them. At the hospital in the UK, I find it unbelievable that the healthcare team was unable to communicate his basic human need for nutrients.


The other idea that popped into my head while reading this article is the many barriers to proper healthcare for individuals with developmental disabilities. From the story, Emma's death appeared to be a result of her inability to communicate with the hospital staff. Perhaps hospitals should require passing a competency or training in communication strategies with non-verbal patients. This could benefit all patients in these settings with communication challenges.

I'd like to think the healthcare teams at the hospitals I have been in would do a better job, but I also believe this story is a reminder not to assume that someone else has already asked the questions you want to ask a patient or family. It is a reminder that as a member of a healthcare team, we can, and must, be advocates for our patients, particularly in situations when their needs are not being met.