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know that it no longer represents the cutting edge of thinking about people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 http://dc-ddleg.blogspot.com.) 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.