On a chilly November morning, I took the Green Line train over to the Joseph B. Martin Conference Center at Harvard Medical School for the annual Autism Consortium Symposium. This isn’t the first time I have attended the research symposium, but this past year is one that I will never forget. There were the usual sessions around the latest and exciting cutting-edge findings in autism research from the giants over at Harvard and MIT, but a panel of 3 remarkable young adults with autism having a conversation about their transition to adulthood – “In their Own Words” ¬– left me feeling inspired and energized. The moderator opened with introductions from the panel – Michael is at Mitchell College for Sports Management; Kush is at UMass Lowell pursuing a degree in Civil Engineering; and Darcie is in the Threshold Program at Lesley University. They chatted briefly about their work experiences. Michael talked about his first job as a baseball coach and when he had the opportunity to work in the classroom as a City Year member. Kush explained how he is part of a team of researchers testing the chemical properties of packaging materials for solders. Darcie expressed how she loves working with animals and children, and the time she was “forced” to answer the phone as part of her job. With a constellation of experiences that led them to where they are today, the most powerful words spoken to a 100+ crowd of researchers, providers and parents were the advice and wisdom they had to share. On to topic of friendships, Kush noted it got easier as he got older since people were “willing to accept differences and not make a big deal out of it.” When offering advice to teens about transitions, Michael said to “find your strength and go for it!” Darcie asserted, “keep your options open because you are going to make changes in this world,” while Kush concluded, “use your supports because you can’t do it alone,” and “surround yourself with a great team of people.” Perhaps, the most insightful perspective for me was when the issue of bullying was mentioned, and Kush said of his offenders, “it was due to a lack of understanding, and it was for them to deal with, not me.” These incredible young adults had the audience grabbing for tissues by the end of the session. I was humbled as I walked out of the conference center on that wintery November day, and all I can remember thinking I wish I had those same insights in my early twenties. To borrow from Margaret Mead, “Never doubt that a small group of thoughtful committed citizens can change the world; indeed it’s the only thing that ever has.” For more information about the Autism Consortium, please visit the website: www.autismconsortium.org For more information about the author, Katherine Blakeslee, follow her rumblings on Twitter @kbswoon
Month: July 2014
Municipal Advocacy: Disability Commissions
Approximately 150 cities and towns in Massachusetts have a Commission on Disability, does yours?
Disability Commissions are an advisory boards appointed by municipal leaders formed to help promote compliance with federal and state laws, represent the interest of individuals with disabilities in municipal government, and act as a resources for individuals with disabilities.
Common issues addressed by many Disability Commissions include handicapped parking spot abuse and implementing curb-cuts on sidewalks, but each commission is able to respond to the local needs of their community.
Almost all Commissioners are volunteers, and at least half of the members of each Commission are individuals with disabilities. Most Commissions meet monthly, and meetings are open to the public.
I encourage you to find out if your city or town has a Disability Commission, and if they do, make a point to attend the next Commission meeting.
View a list of Disability Commissions in Massachusetts available from the The Massachusetts Office on Disability web site
Social Capital, Disability, and Healthcare
I’m sitting in my office with my patient, who is a young girl with significant learning disabilities, and her mother. Since the last time I saw them six months ago, she continues to struggle with academic progress and behavioral problems at home. At our last visit, I had provided her mother with a list of recommendations: 1) have the school repeat assessments, 2) obtain in-home therapy supports, and 3) enroll in after-school programming. I ask her mother about each of these recommendations, and feel my shoulders drop as she explains why she was not able to complete them.
I am a pediatrician primarily working with children who have developmental disabilities and their families. For my patient, my recommendations alone were insufficient to improve her well-being. Why is it that some patients are able to access necessary health-related services and others are not? Aside from the more obvious logistical barriers (e.g., insurance, transportation, time), an individual’s social capital influences access and health-related outcomes. Although the definition of social capital varies, there are two key components: 1) relationships and social structures that are based in trust and norms of reciprocity, and 2) self-determination encompassing goal-setting and making decisions to work toward reaching goals. For individuals with disabilities and their families, social capital influences their ability to be fully included within the community, access social supports, and increase their quality of life.
As I delve deeper into this particular visit, I appreciate that the child and her mother depend upon a handful of neighbors to help them out, and they do not have much social connections outside of this immediate network. Their native language is not English and her mother is not confident that she is able to communicate effectively with the school or healthcare systems. Mother and child both feel disempowered to change their long-term outcome, instead trying to overcome everyday obstacles.
As it relates to health outcomes, social capital might influence an individual’s access to health relevant information, the degree of informal support in situations of illness, and the ability to self-advocate for health-promoting services/supports. For this visit, I take a step back and address these points. I discuss how she (the parent) might access information on learning disabilities, as well as information on potential services that target her child’s learning disabilities. We work through the informal system of supports that are present and discuss how it can be strengthened. For example, might it help to go with someone the mother already has a relationship with to the school to request for additional testing. We also discuss how new supports might be made with other groups of individuals. Finally, I help my patient and her mother define their own set of goals and the steps that they would take to attain those goals. I end this visit with no recommendations, only having tried to help this family think through how to build social capital.