ARC of MA Health Disparities Follow-up
Published April 17, 2009 @ 09:47AM PT
In February, I posted about the Boston Globe's article on ARC of Massachusetts' study of health care disparities. ARC has since published the study itself, both an executive summary and a full report, under the title Left Out in the Cold (that last link includes health disparities news items in addition to the research report).
This study is particularly nice in that it surveyed all parties involved in providing health care to adults with intellectual or developmental disabilities (ID/DD): parents/guardians, community support professionals, health care professionals, state legislators, health insurance providers, and yes, self-advocates themselves.
Issues were noted in following areas: 1) health care professionals, legislators, and insurance providers lacked sufficient knowledge about ID/DD, 2) communication barriers between patients with ID/DD and health care professionals, including lack of sufficient direct communication, 3) lack of quality health care service due to insensitivity, bias, or ill-suited medical environments, 4) issues finding or accessing appropriate health care in the first place, 5) insurance issues, 6) poor care coordination, 7) lack of inclusion of people with disabilities in policy considerations concerning health care, 8) health care professionals thinking insurance reimbursement is too low.
The final recommendations of the project team after examining the multiple perspectives of the participants:
1. Develop and implement a robust educational program for health care professionals
2. Reduce reimbursement barriers of health care professionals and community support staff
3. Improve access to high-quality health care at medical practices and hospitals
4. Develop and provide formal care coordination for adults with ID/DD
5. Develop and implement a robust training program for individuals with disabilities, families, community support professionals, and volunteers
6. Conduct additional research
Is this the right list? The list looks pretty smart to me, but how hard will it be to implement? And who is going to implement it?
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Comments (1)
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Dora is committed to improving quality of life for individuals on the autistic spectrum--including herself! She is Co-director of the Academic Autistic Spectrum Partnership in Research and Education and a member of the Autistic Self Advocacy Network's Board of Directors.
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As the Director of Health Care Policy at The Arc of Massachusetts, I want to thank Dora for following this important issue and having this discussion. Our goal remains to include individuals with disabilities while reforming our current health care system. We also are advocating with The Arc US and others to insure that federal health care reform addresses the barriers faced by our constituents. Otherwise, health care reform will be health care expansion not reform.
We have a tough undertaking and resistance ahead of us; however, the report’s recommendations can be implemented. Our study documented examples of good quality care as well as positive experiences reflected at community health care practices and hospitals. This demonstrates that barriers can be overcome and the improvement of the community health care system can be achieved.
Dora, you raised a good question regarding who will implement the report’s recommendations. We must work collectively with all involved parties within our own and across states to advocate for systemic change; policy makers and those in leadership positions must know about this urgent problem. Health disparities and the reality of disparate health outcomes faced by individuals with disabilities must be on the “radar screen” and be a part of the health care reform dialogue. (Reminder: our report found that disability discussions in the Massachusetts’ legislature during health care reform were absent).
The Arc of Massachusetts will tackle all but one of the recommendations in the future. Due to limited capacity, we hope other organizations and groups will be inspired to conduct additional research and further investigate the questions that arose from our study. We actively search out partners as well.
Currently, we are the policy implementation phase of the Health Care Project. Massachusetts’ Representative Peter Koutoujian has sponsored a placeholder bill (HB 2116) to eliminate health care disparities among individuals with intellectual and developmental disabilities. Due to the economy and our state budget, we have advocated for and lean towards those recommendations that will not cost the state significant, additional money in the short-term. The language of the bill is to be determined by late May 2009.
Posted by Amanda Nichols on 04/30/2009 @ 01:37PM PT
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