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 As we read about this bill now, though, we don’t have to get past the title to know that it no longer represents the cutting edge of thinking about people with disabilities.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.