Leaving NCD: Accomplishments and Disappointments from Five Years of Public Service

Today is my last day as a Member of the National Council on Disability. In previous years, Council Members were never quite sure of when their final departure would be, as they served until replaced by the President. Since the passage of the Workforce Innovation and Opportunity Act cut the Council down from fifteen members to nine, I have a more definite departure date than some of my previous colleagues.

While I would have been glad for the extra time, I also appreciate the opportunity to reflect on my last five years of public service. One of the frustrating aspects of government work is the need to constantly be moving from one crisis to the next. Because of that, opportunities for introspection are fewer than I would like.

I owe a profound debt of gratitude to President Obama and his team for inviting me to serve on NCD, and an equally great debt to the extraordinary staff and fellow council members at NCD who I had the privilege of working with. Very few people have the opportunity to serve in government, even in a part-time, advisory role. My service began when I was only 22 years old, making it even more unusual. Fortunately, in the five years I spent on NCD, I was almost always treated like an equal by my more senior colleagues, many of whom brought decades of policy experience of their own. I also had the honor of being entrusted with leadership roles on some truly fascinating projects and policy committees during my tenure. Because of those experiences, I have decided to start this blog with a series about a few of the areas of work I’m most proud of – as well as the areas I most regret not getting a chance to act on.

I have the pleasure of spending my last day on the Council working. Today, I’ll be speaking at a congressional briefing on mental health policy in my last official Council appearance. As a result, I’m going to schedule my first blog post to launch the day my term ends (I didn’t write this today) and hope to have some interesting feedback by the time I return home this evening.

Before I begin, I want to preface this blog project with some information about my intentions. As a rule, I don’t want this blog to be self-promotional or too focused on my work. I have created it very specifically because I want a space to write that is not within an official organizational context. Anything that you read here is me and me alone, and should not be attributed to ASAN, NCD or MySupport. It is also my sincere ambition to turn this into a place where I can write about (and have) passions that are entirely disconnected from disability advocacy. If you subscribe, be prepared to hear my opinions about topics like Star Trek tropes, Jewish culture and religion, travel stories and even occasional forays into cooking food (G-d help me on that one).

At the same time, I’ve felt for a long time that there is a disturbing disconnect between well-established practices and norms on the part of professional disability rights advocates and the information available to the average member of the disability rights grassroots. We spend a lot of time communicating with people about why we must change the status quo, but give them very little information as to how that can be accomplished. At best, we will occasionally tell them who to call and provide a few talking points, but very little is transmitted that might allow a person to begin doing serious disability rights work outside the direction of a national organization or association.

This often leads to misunderstandings and significant tension between those employed to work on disability rights advocacy full-time and the people they represent and must mobilize to pressure policymakers. It is also the cause of a great deal of just plain ineffective advocacy on the part of both the grassroots and the professionals. I also believe it may be part of the reason why service-providers have much more political power than self-advocates and even families in most state and local disability advocacy. To address that, I am going to try and write about work I did on the Council giving as much detail as I can to the underlying “how to” of what I was involved in, not just the why.

While there are certain constraints that anyone involved in the policy process has to operate under regarding what I can and cannot discuss publicly, I will try and be as open and straightforward as I reasonably can. It is my hope that one of several functions this blog can serve is to explain the mechanics of effective public policy advocacy to a public that may not have access to the extraordinary teachers and mentors I have benefitted from over the course of my last five years on NCD and my last ten years doing disability rights activism.

With that in mind, below are the areas that I hope to cover in describing my time on the Council. Posts will be whenever I have time and on no set schedule. If reading about these look interesting, feel free to subscribe to get an e-mail update when I post.

Accomplishments

  1. Sheltered Workshops and Supported Employment
  2. De-Institutionalization and Community Living
  3. Medicaid Managed Care
  4. Parenting Rights of People with Disabilities
  5. Social Security Reform/Protection
  6. Bullying Prevention

Disappointments

  1. Bioethics
  2. Educational Achievement and Inclusion
  3. Mental Health Policy and Support
  4. SSI Asset Test
  5. Department of Labor overtime rule
  6. Post-secondary education access

I have scheduled my first blog post in my “Leaving NCD” series to post tomorrow, after my final day on the Council. I’m going to start with a post on one of the areas I’m most passionate about and still engaged in with ASAN: sheltered workshops, sub-minimum wage and supported employment. Check back here this evening for a look.

7 thoughts on “Leaving NCD: Accomplishments and Disappointments from Five Years of Public Service

  1. It takes a whole lot of coal to light a silberman-sized fire to warm autistics and their movement forward, so thanks for your NCD train loads, and the respected blackness under you nails from the coal-face. ❤

    Like

  2. Thank you for your years of service through the NDA, and the encouragement I and others have felt along the way. Congrats on taking up this new journey, and I’m looking forward to your future blog posts.

    Like

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