March is Developmental Disabilities Awareness Month.

I’ve always thought this to be a fascinating idea, a month during which we are urged to increase our awareness of developmental disabilities (DD). I suppose this must be an intellectual awareness and a social awareness of people with developmental disabilities. Both are laudable, by the way. We absolutely ought to increase our understanding of DD and the experiences of people with DD. But for me at least, I wonder: Is awareness enough? I’m aware of lots of things in my community. I’m aware of social justice issues, for example. Many of us can elevate our awareness of any issue by educating ourselves to gain a deeper understanding of whatever the issue is. This allows us to speak intelligently and intelligibly, and we can rightly claim awareness.

But, is awareness enough?

In February, I was invited to deliver a D’var Torah (literal translation is “words of Torah”) at a local shul on the occasion of Jewish Disability Awareness, Acceptance, and Inclusion Month (JDAIM). Sparing you the whole of the talk, I challenged us—certainly the Jewish community, but really ALL of us—to the following:

“It is my view that we are well aware of people with disabilities. One in four Americans live today with disability, and as we age, disability of some form is likely. One in 44 children in the US are diagnosed with Autism. What will be our actions? The things we actually GET DONE are built on awareness but require action. They require doggedness and relentlessness.”

Put more succinctly and directly: No, awareness is NOT ENOUGH.

Our friends at the National Association of Councils on Developmental Disabilities (NACDD), led by the indefatigable Donna Meltzer, frames the work. It begins and arguably ends on the simple but profound notion that strong, diverse communities are built on bringing people with and without disabilities together in all facets of community life. Action built on awareness.

We are aware of the myriad barriers to the fullest engagement of people with DD in community life. What action will we take to once and for all eradicate those barriers? What will YOU—yes, you, reading this right now—do? What action will YOU take?

As it happens, March was an extraordinary 31 days during which each of the following occurred:

• The Centers for Disease Control and Prevention (CDC) once more changed the prevalence of Autism, a common developmental disability, from 1 in 44 kids to 1 in 36 kids. It wasn’t long ago that we thought Autism effected 1 in 150 people. The implications of this are extraordinary, from special education capacity to an already stretched community system of adult supports with interminably lengthy waitlists for services and supports across the United States. (There are about 500,000 people with developmental disabilities on states’ waiting lists for community supports. A half-million people! And those are just the folks we know about.)
• Two national studies were released in March showing that our Direct Support Professional (DSP) workforce crisis is, well, a full blown crisis. The National Core Indicators State of the Workforce Survey Report puts DSP turnover in calendar year 2021 at an absolutely gobsmacking 43.3%. It’s an astonishing and frankly terrifying reality. For every 100 DSPs hired to work alongside people with DD, more than 43 of them are gone within a year. Oh, and the average DSP wage in these United States? $14.50. (For those of you keeping track, that’s $30k annualized. For a 2-person household, that’s about 175% of the federal poverty level for 2021.) The second report, the 2023 Case for Inclusion, speaks to 63% of community providers in the United States who have “discontinued programs or services in response to challenges related to high [staff] turnover and vacancy rates.” More than 60% of organizations just like Makom have shuttered programs and services. Against growing waitlists and more and more people with DD, our system of supports is constricting. This same report highlights 83% of US providers of services and supports turned away or stopped accepting new referrals.
• President Joe Biden released his fiscal year 2024 budget proposal in March. On its own, this is not especially notable. But, in that budget, President Biden is calling for the following investments:
  •       A $2.1 billion increase (about 14%) in spending on special education services for students with disabilities in pre-K through high school. The budget also calls for $392 million for early intervention for infants and toddlers and an added $150 million to recruit and retain special educators.
  •       Increases in spending in Medicaid home and community-based services (i.e., community services like the supports Makom offers) to address the needs and aspirations of people with disabilities, including DD, to live in their home communities and be supported with a stable, quality DSP workforce.

Yes, I think it’s fair to observe that our awareness continues to increase. As a society, as a country, as a community, our awareness has never been fuller. Again, though, that’s not the issue. Our obligation is to actually do something with our awareness, to act, to engage, to translate our hand-wringing to demonstrable, results-oriented action. So, that is my challenge to all of us.

The time for each of us to decide to act is now. Here are some ideas:

1. Call your member of Congress. Don’t know who it is or their contact info? No problem. Grab a pencil, and go HERE to find out. Call him or her. Talk with a staffer (these are the folks who really get stuff done!). Tell them your story. And, demand, politely of course, that they support investments in early intervention and home and community-based services for people with developmental disabilities.
2. Call your state elected officials—delegates and senators. Do it now, as their deadline to pass a budget is April 3. Don’t know who they are? Yep, no problem. Go HERE to find out. Tell them you support Governor Wes Moore’s FY2024 budget proposal, which specifically calls for $616 million to fund developmental disability provider rate increases.
3. Make absolutely, positively sure you’re registered to vote, educate yourself on candidates running for office, and learn about the issues central to national, state and local elections. I know, I know. “We just had an election, didn’t we?” Yes, we did. And the next one will be here before we know it. Every vote matters. Here at Makom, I’m enormously proud to be working alongside Melissa Sachs on a project to encourage everyone who is supported by Makom to learn about and take steps to register to vote. #AllMeansAll
4. Join The Arc of the US, or become an Ambassador for the National Down Syndrome Society, or get involved with The Autism Society. There are lots of options out there, inevitably including one that will resonate for you.
5. Learn more about and support self-advocacy organizations, like People on the Go Maryland or People First and Ally Toastmasters at the Arc of Northern Virginia. At a national level, check out Self Advocates Becoming Empowered or the Autistic Self Advocacy Network. There are opportunities to support their work financially or otherwise, and opportunities to get involved.

My nearly four years at Makom have shown me the most exquisite glimpse into a community that doesn’t sit on its hands. My nearly 36 years of professional experience in this field have shown me that stuff gets done when we get busy and act. May the 2023 Developmental Disabilities Awareness Month be a tipping point for each and all of us, the occasion when we decide that we’ve admired barriers to the fullest expressions of community engagement of people with DD long enough to be aware, and the springboard to dogged and relentless action, individually and as a community, that converts our awareness into tangible results.

It may not be ours to finish this task, but neither may we desist from undertaking it.