Advocating for individuals with developmental disabilities during uncertain times

Donna Meltzer is CEO of the National Association of Councils on Developmental Disabilities (NACDD), where she leads 56 Councils across the nation to raise awareness at the government level for those living with developmental disabilities. She also serves on the National Advisory Board for UnitedHealthcare Community & State, where she shares knowledge and information about the needs of individuals with developmental disabilities. Meltzer is a featured writer and explains how COVID-19 is impacting those with development disabilities in her blog below.

Every March, the NACDD partners with the Association of University Centers on Disabilities (AUCD) and the National Disability Rights Network (NDRN) to raise awareness about individuals with developmental disabilities. Typically, we use the month share information about the importance of meaningful employment, close friendships and how being part of a community is the key to a life well-lived. However, this year’s awareness month arrived alongside COVID-19, which required us to take immediate, proactive steps to make sure the needs of individuals with Intellectual and Developmental Disabilities (I/DD) were known and represented. Now, we are using the month of May to emphasize the importance of protecting the rights of the I/DD population during the pandemic.  

Under normal circumstances, the councils would be spending this time making sure that people with I/DD are out in their communities working, playing and learning. Now, we are telling these individuals that they need to stay at home. In times of crisis, individuals with developmental disabilities are often more vulnerable and are in need of legal protection, accurate, easy to understand information and support while in isolation. As COVID-19 stirs up new legislation on Capitol Hill, advocates are working hard to protect the rights of individuals with I/DD and holding policymakers accountable at the national and state level.

Those who don’t work with individuals with disabilities on a daily basis may not be aware of the differences between a disability and a developmental disability. A developmental disability is defined by three things:

  1. The disability occurs at birth or before the person becomes 22 years of age
  2. The disability will last a lifetime
  3. The disability impacts three or more daily living activities, such as getting out of bed, feeding yourself or bathing yourself.

You might be familiar with some developmental disabilities such as cerebral palsy, autism spectrum disorder, muscular dystrophy, Down syndrome and fetal alcohol spectrum disorder, all of which affect a person’s growth and/or cognition. There are roughly 57 million Americans who have a disability, and about 7.5 million of those are developmental disabilities, though the federal government is currently conducting an analysis to get better data. The rise in diagnosis of people with autism has attributed to the growing number of people identified as having I/DD, depending on where they fall on the spectrum. The Developmental Disabilities Assistance and Bill of Rights Act of 2000 (P.L. 106-402) currently states that there are only 4.5 million individuals living with a developmental disability, while the CDC’s number is slightly higher. Other sources cite the number as high as 7.5 million, which is likely more accurate, though could still be on the low end.

As COVID-19 continues to upend daily routines, the work to support people with I/DD and their families is even more critical.

NACDD is actively working with its member Councils across the nation’s states and territories to distribute factual, plain-language materials to help inform individuals and their families about potential risks and necessary preventive measures they should take. With many individuals with development disabilities living in their own homes, often with aides, we are advocating that Direct Support Professionals (DSPs) and Personal Care Attendants (PCAs) be deemed essential employees. Meanwhile, NACDD is partnering with the National Alliance for Direct Support Professionals (NADSP) to prepare DSPs and their clients on what to do if their support provider can no longer come to their home or can only help on a limited basis.

Our 56 Councils across the United States report directly to governors, providing direct feedback and raising awareness for their communities. Because we believe those who live with disabilities are our best source of information, at least 60% of each Council’s members have a developmental disability. These Councils work to conduct outreach, provide training and technical assistance, remove barriers, develop coalitions, encourage citizen participation and keep policymakers informed. It is the NACDD’s responsibility to ensure these Councils continue to receive federal funding so that they can continue raising awareness through these types of outreach.

Of course, our work is never done. We are always upholding and protecting our federal statute, the Developmental Disabilities Assistance and Bill of Rights Act (DD Act), as it is the only legislation that spells out exactly what our nation must do to support and create communities that are ready and able to support people with I/DD. For nearly 50 years, the DD Act’s crafted system of networks and supports has made it possible for these individuals and their families to live their best lives. Over time, there have been attempts to dismantle or significantly underfund the DD Act programs. Fortunately, Congress views these programs as essential and is continuing to make it possible for people with I/DD to live independently in the community. But if there ever comes a time that we do not win enough Congressional support, much of our progress will be lost. This includes helping people with disabilities choose where and with whom they live, providing access to meaningful employment and giving them the freedom to live as respected citizens within their communities.

Now, more than ever, we must work to stay true to the precepts of the DD Act and seek additional funding to keep people and systems secure as we work through the COVID-19 crisis. These are uncertain times, and any legal or policy decisions made in light of this pandemic could have direct consequences to the level of support available for people with disabilities. Everyone deserves the freedom to live their best life on their own terms. We invite you to join us in our mission to represent those who cannot always advocate for themselves. Not sure where to start? Head over to our Developmental Disability Awareness Month page to learn more about what the NACDD is doing to support our communities and how you can help:

Read more from Donna Meltzer

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