Wednesday, October 29, 2014

Raising our Voices

I received a comment on my October 6 post asking if there had been any responses from the candidates.  As of today, with many people having voted already and voting day itself just around the corner, none of the candidates have responded.  This unfortunately reflects the fact that issues affecting D.C. citizens with developmental disabilities just don’t seem important enough to them.  They don’t realize that we are a meaningful constituency, and they will not realize it until we become vocal.  Whoever becomes our new mayor, folks, let’s promise that a year from now s/he will know that our voice and vote count!  

Thursday, October 23, 2014

On the Spectrum in DC: There’s Not (Yet) Much There

On October 18 I attended the annual luncheon of the D.C. chapter of the Autism Society of America.  DCASA has been in existence for 33 years, formed by a cluster of D.C. families who - far ahead of the curve at the time - banded together to create a community of support for their family members with autism:  I’m a latecomer and this was only my second year attending the DCASA luncheon.  (Thanks Tina and Ron!)  This year Laura Nuss was the featured speaker, and she specifically tailored her remarks to this group, addressing in particular the good work DCASA does in sponsoring Camp Claggett and calling attention to broad national trends and initiatives with respect to autism.  At the end of her speech she mentioned DDA’s interest in broadening the reach of disability services in D.C. in the future to reach people with autism who do not currently qualify for services.

This intersects with a point I’ve made in earlier blogs:  right now D.C.’s only Medicaid waiver for people with non-physical disabilities is based on a finding of IQ of 69 or below before the age of 18.  There is no autism or broader developmental disabilities waiver yet, and there can’t be until the D.C. council takes further action.  (Listen up: this will require advocacy!)  Until that happens, if you’re trying to get services for your family member, you’re playing by the current rules, and it’s important to realize that DDA’s intake and eligibility unit is in charge of making sure everyone who qualifies meets that standard (  From your first application submission for DDA services, you must make sure that you have the relevant documentation demonstrating your family member meets the requirements.  Even if you never wanted your family member to be labeled as intellectually disabled (ID), if you want DDA services, there’s no choice at this time.

It’s the Medicaid waiver, administered by DDS/DDA, that unlocks the broadest array of services.  However, if your family member has autism and does not have a diagnosis of intellectual disability that will qualify him or her for the current waiver, DDS/RSA (see my post from August 11 entitled “Structures and Services…”) has a limited set of programs under Project Search, a nationwide program specifically focused on helping young adults at the upper end of the autism spectrum get jobs (although all students receive training under Project Search, only a minority wind up being offered jobs).  There are two categories of Project Search programs:

  • One, in partnership with DCPS, is for young people who are still in school.  Only students who are working toward a certificate of completion (as opposed to a high school diploma) can qualify, and when they sign up they have to agree that the first year of Project Search will be their last year of school: 
  • More recently, RSA has piggybacked on a couple of Montgomery County Project Search programs for those who already have left school, sponsored by the Ivymount School in partnership with SEEC (  These involve training and job locations at the Smithsonian Institution and the National Institutes of Health (NIH), but the program is highly competitive.  Until recently there was another, D.C.-specific program at George Washington University, but they closed it down in May and haven’t yet announced whether or when it will start up again.

Beyond this, there are no ongoing structured programs in D.C. for people with autism who need supports.  What you will find are random program,s, activities and such around the area.  A couple of specific organizations to be aware of – again, mainly for higher-functioning individuals – are the Autism Self-Advocacy Network (, which offers nationally competitive internships in the D.C. area; a Yahoo group, Asperger Adults of Greater Washington (, a support/social group which meets monthly downtown; and a Meetup group called Adult Autism Spectrum Friends ( for folks along the whole spectrum.  (I don’t have personal experience with either of the social groups.) Mat McCullough, executive director of D.C.’s Developmental Disabilities Council - - sends out information about various other activities and programs around the area for persons with autism and other developmental disabilities, including the DDC’s own D.C. Advocacy Partners (DCAP) course.  

However, none of these provide supports and services on an ongoing basis to anyone with autism or any other developmental disability unless they first meet the ID standard.  The Individual and Family Supports waiver, now under development in DDA, will be much better than nothing for families who currently are going it alone, but the real answer is going to be action in the D.C. council to allow those with autism and other non-ID developmental disabilities to qualify for more extensive services.

Monday, October 6, 2014

Questions for the candidates

I've just submitted the following to the mayoral candidates:

I was formerly an executive in the federal government and am the parent of a young person with a developmental disability in the District.  Among my current advocacy efforts is a blog,, which addresses issues affecting D.C. citizens with developmental disabilities and encourages others to get involved in opportunities for reform.  I am not a journalist and this is an entirely volunteer effort on my part.  Your campaign’s answers to the questions below will be posted on my blog before the November 4 election:

-          What do you believe has been the District’s most significant accomplishment of the past five years to support adults with developmental disabilities?
-          What is your #1 priority once the Evans case has been closed?
-          As mayor, would you support reintroduction of the Developmental Disabilities Reform Act?  If so, why?  If not, why not?
-          Would you retain the current director of the Department on Disability Services if you are elected?  If not, what attributes would you look for in a new director?
-          As mayor, what specific work or educational initiatives would you promote for adults with developmental disabilities in the District?
-          Are there policies or practices in other jurisdictions with respect to adults with developmental disabilities that you would like to encourage in D.C.?

Thank you.

Carol A. Grigsby