Wednesday, December 24, 2014

The Holiday Season

This holiday is a good one for our family.  When I think back to this time last year, I couldn’t have predicted that would be the case, and I feel very thankful.  This blog is a way of trying to give something back for our good fortune.  

Some of you reading this may not be doing as well.  You may be struggling to get the supports you need to live the life you want.  You may be a family member, friend or other unpaid support struggling to help someone you care about and growing more tired and frustrated by the day.  You may very well not have time to make it to all the meetings you hear about in this blog, and I only hope you’re able to get to a computer to see this.  Not everyone can.  

A very big goal for me over the coming year is to try to get more information out to folks who can’t come to meetings on weekdays because they’re at work, can’t get transportation, or are just overwhelmed.  Information affecting you needs to be more routinely and easily available, and I raise this every chance I get.  Programs and services, even when they’re out there, aren’t worth a thing if folks don’t know about them, and seeing the need for change isn’t worth a thing if you don’t have the time or information to make that change happen.  I’m only one voice, but if you don’t know anything else this holiday season, please know that I’m a voice for you.  Happy holidays to you all.

Friday, December 19, 2014

35 Years and Counting...

I mentioned in an earlier blog that the filing of the Evans lawsuit in 1976 led to political action as well.  The D.C. council passed D.C. law 2-137, “The Mentally Retarded Citizens Constitutional Rights and Dignity Act of 1978,” setting the framework and standards for the city’s treatment of individuals who had previously been living at Forest Haven.  This bill was critically important and ahead of its time in the late 1970s.  It said that people designated by the bill would have the same rights as other citizens of the District of Columbia, particularly the right to live in the community rather than in an institution, and due-process rights.  As we read about this bill now, though, we don’t have to get past the title to know that it no longer represents the cutting edge of thinking about people with disabilities.  In 2012 the “People First Respectful Language Modernization Amendment Act” altered the language of law 2-137 to refer to “persons with intellectual disabilities,” bringing the terminology used in the bill into the 21st century.  Sadly, however, the essential provisions of the bill remain the same as when it was first passed, at the dawn of D.C. home rule. 
Incidentally, I’m not the first to notice this! As my son was entering his mid-teens and I was just barely beginning to examine the world of adult services he would enter five years later, a strong group of advocates had just succeeded in getting an entirely new bill introduced into the council.  That bill, the Developmental Disabilities Reform Act, or DDRA, was introduced in the council in 2009 and for a time it seemed to have tremendous momentum.  (The blog that was set up to track its progress can still be found, at  But as 2010 drew to a close, it died in committee.  Had it passed, this bill would have modernized a lot more than language, and now, four years later, two of its most important proposed reforms remain incomplete:

Commitment.  People who lived in Forest Haven were sent there by the court system through a process of commitment, and although law 2-137 focused on deinstitutionalization, it kept the courts involved.  Since the law has not been substantively revised, it is still the case that persons with moderate to severe intellectual disabilities are “committed” to receiving community services.  The impact of this is that a judge in the D.C. Superior Court actually orders the services that DDA must provide, rather than the person or their family members having the decision making power.  This was briefly discussed at the Supporting Families Community of Practice meeting on December 18 and the next steps in addressing this through legislation will be a major focus of the next scheduled CoP meeting in the spring. 

Limited reach.  Because 2-137 is so specific about who can receive services, only individuals with an intellectual disability (in general, IQ of under 70) can qualify to receive services.  Anyone with another type of developmental disability cannot qualify for DDA services.  The DDRA would have changed this, and the bill did not advance to the council floor in part because of the expected cost of reaching people with autism and other developmental disabilities who often do qualify for services in other jurisdictions but do not qualify here.  In the interests of fairness the system must change to be more inclusive, but budget considerations will be prominent in any council deliberations on a bill to do so, and council members will need to hear very clearly that this is a priority for the citizens of D.C.  That, my friends, means us.

No word as yet on Mayor-elect Bowser’s selection to head DDS.  Whoever it is, we must make sure these fundamental reforms are on their agenda, as well as on the agenda of Council member Jim Graham’s successor as chair of the Committee on Human Services.

Tuesday, December 9, 2014

The Mayor-elect Needs to Hear from You!

In my last post I wrote about the public forum on December 2 for Mayor-elect Bowser’s health and human services transition committee.  That forum was dominated by issues of homelessness, which was no surprise.  But this is still the committee – chaired by Laura Meyers and Louvenia Williams - that will be making recommendations to the mayor-elect with respect to disability concerns, as well.  There are crucial issues on the horizon – the need to bring the Evans lawsuit to a close, a goal that’s nearly within reach; the need to alter D.C.’s outmoded system of “commitment” for individuals with significant intellectual disabilities; and the need to broaden the system of waivers to cover not only persons with intellectual disabilities, but those with developmental disabilities as well.  If Laura Nuss, the current director of the Department on Disability Services, is replaced at this time, all these urgent goals will be dealt a serious setback.  Every one of you reading this has a stake in these essential reforms, and therefore you have a stake in keeping Laura in this position.

The mayor-elect and her transition team have a great many important decisions to make about filling key positions in the administration.  Just today she began making her first appointments, but as she herself has said, not all incumbents must go.  She needs to hear from us, and she needs to hear from us now, that Laura Nuss is one of the senior appointees she must keep on the job!  So put yourselves down in front of your computers, go to the mayor-elect’s transition website,, hit “Contact us,” and tell the mayor-elect, as well as Ms. Meyers and Ms. Williams, that Laura Nuss needs to stay.  It’ll only take you a minute, but it’s an important minute.

Once we know Laura is being kept on, we can get back to focusing on the reform agenda.  And when the mayor-elect gets all these messages, she’ll also know there’s a constituency out here that cares about disability issues, and we’re going to speak up! 

All together now!  Just do it, folks!