Sunday, November 22, 2015

Giving Thanks

When you’re trying to advocate for change – for a person you love, for a community you care about – you can find yourself talking only about what isn’t working.  So I want to take a moment, with Thanksgiving upon us, to make a special point of thanking the Direct Support Professionals who work with my son, and those others throughout the city making it their business to keep those we love safe, happy and making progress in their lives.

As I write this I’m thinking of one individual who has been a part of my son’s life since he first came back home to D.C. last year.  In fact she’s the only person besides us who was in the room for his first ISP meeting during that first crazy week when he was starting to receive services.  His daytime community navigator has also been a rock, even when the role has been thankless.  There are many others, though.  Even when things haven’t been going smoothly at the management level, I’ve been impressed by the integrity, kindness and patience of almost every DSP who’s come through our son’s life.  They don’t have an easy job, and they often face the same headaches we do, along with quite a few more of their own.  One standard I’ve always tried to stick to is not to add to their headaches, but to treat the DSPs with respect and show my appreciation, since I know they’re on the front lines.

It may be even tougher for some of them to feel thankful this year, since a new formula D.C.’s been required to institute is going to mean lower rates of pay for some of the people providing support under the I/DD waiver.  I’m not an expert on all the job categories so I’m not sure who is directly affected, but it reminds me to be even more appreciative. 

So this Thanksgiving, have a wonderful holiday with your family – and thank a DSP!

Sunday, November 15, 2015

Overdue Change for the District

I’ve been feeling pretty overwhelmed lately.  Getting on the same page with my son’s new supported-living provider has been a challenge, though things may be starting to improve.  My son keeps skipping out on his IDS program because it’s not meeting his needs and we’re waiting for DDA to offer any solutions.  And the D.C. Office of the Chief Financial Officer, for the third time this year, has misplaced my son’s monthly check – this time, lost it for good.  You know it: every day there’s some obstacle or headache standing in the way of the real work of improving the lives of those we care about.

So it helped me to lift my head above my day-to-day problems on November 12 and attend one of the DDS briefings about the legislation that’s been introduced into the D.C. council.  This bill, the “Citizens with Intellectual Disabilities Civil Rights Restoration Act,” addresses one of the major hurdles in the way of moving D.C. into the 21st century of disability rights - namely the practice of commitment.  At this point, please look to the right and read my posts under the label “Past Reforms” (especially “35 Years and Counting” and “Where We’ve Come From”) so you’ll know what I’m talking about, and also take a look at the page “Acronyms You Should Know.”  Now you’ve done that, please keep reading!

About 1/3 of the people receiving services from DDA under the I/DD waiver still have to be “committed” by the D.C. courts in order to get those services.   We are the ONLY place in the country where this is still true, and I’ll admit that I find that horrifying.  When my son was found eligible to receive services, I was terrified he would have to be “committed” and that a lawyer would step in between him and us to decide what supports he needed.  Coming from that perspective, it was helpful to me to sit in the Shaw library and hear from people whose family members are under commitment:  it made me more understanding even though it hasn’t changed my mind.  There are people who still remember when the only way to get D.C. to keep people with disabilities safe was for the court to be watching over the government’s shoulder.  A huge amount has changed since that time, but it’s not hard to understand why some people like a system they know, especially if they happen to have a lawyer they like.  For people in that position, the bill allows people under commitment to continue if that is what they, or a trusted person, decide they should do.

And on the subject of “trusted person,” the bill also proposes an alternative to court-appointed guardianship, in the form of a Supported Decision Making (SDM) agreement to allow the person with a disability to formally designate someone who can help her/him make important decisions.  Supported decision making is an essential concept, and I also believe everything needs to be done to avoid guardianship where possible.  I’m going to be taking a very close look at the bill, though, to make sure the proposed SDM agreement doesn’t have unintended consequences where a different legal alternative to guardianship, the power of attorney, is concerned.  Both are needed.

Erin Leveton ( said the bill will soon be posted on the DDS website and that a joint hearing by the council’s Health and Human Services and Judiciary committees will soon be scheduled, probably in January.  I’ll do my best to keep folks informed about the timing, but between now and then, there are a couple of other important things to mark on the calendar.  The report to the council on what it would take to expand eligibility for services to all people with developmental disabilities will be submitted on December 1, and DDS has also promised to post that report on its website.  And the next meeting of the Supporting Families Community of Practice will take place on December 14

Speaking personally, I’m hoping that some of the challenges we’ve been facing will smooth out over the holiday season so that we and our son will see fewer obstacles and more person-centered solutions by the time the New Year rolls around.