Thursday, August 31, 2023

Keeping People's Rights at the Forefront

This has turned out to be a different type of year from the one I expected. Many of you may share that feeling, given that we’re all still going through a period of adjustment in the wake of our long pandemic.  I launched into this year in full confidence about the areas in which my advocacy could make a difference, but I’ve found myself drawn by personal experience and serendipity in a new direction.

Early in the pandemic I served on a working group examining how DDS and partner agencies should balance the desire to protect people from contracting covid-19 with the need to respect people’s rights to make their own individual decisions.  Tiffani Johnson, rights and advocacy specialist at DDS, and Sandy Bernstein, legal director at DRDC/ULS, delivered a much-needed refresher on those issues at the DDS Friday forum this last February. (Recordings and presentations from the Friday forums can be found here:, although I wasn’t able to find the Power Point for their February presentation and I’ve asked DDS to post that.)

Obviously, though, such thorny issues arise not only in the context of a pandemic but in other day-to-day situations too, and recent developments have made me appreciate just how important it is for people to have advocates in their corner when the hard cases come up.  Shortly after her presentation with Sandy, in April Tiffani invited people attending the Friday forum to volunteer as members of the RCRC (Restrictive Control Review Committee, primarily responsible for reviewing restrictions contained in behavior support plans) or the HRAC (Human Rights Advisory Committee, responsible for broader protections of people’s rights under DDS programs).  These groups include self-advocates, family members, and other advocates. (See the link above for the April recording and Power Point.)

For as long as we’re around, my son will have his father and me to advocate for him and to help him ensure his rights are being respected, but it’s also good to know there are people conducting an independent review of whether DDS and its partners are adequately protecting individuals’ rights through the programs they administer.  I also know there are people getting DDA services who, for lack of family or other supports, have to depend entirely on this independent review process. Tiffani’s presentation came at the right time for me as I weighed the most effective use of my advocacy skills at this time, so I’ve joined the HRAC to see if I can help make an important difference in a few people’s lives.  Maybe you want to see this process in action for yourself, and if so I’d encourage you to reach out to

Carol A. Grigsby is a disability rights advocate and the parent of a disabled young man receiving supports from D.C.’s Department on Disability Services.

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