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Closing DD Awareness Month and Introducing ACL’s New Commissioner on Disabilities

March 30, 2022
By Jill Jacobs, Commissioner on Disabilities at ACL

Every March, ACL celebrates Developmental Disabilities Awareness Month with the National Association of Councils on Developmental Disabilities and partners. Throughout the month we have highlighted ACL’s DD programs on social media and shared other posts to raise awareness about the inclusion of people with DD in all aspects of community life. We have also offered information to identify barriers people with disabilities still sometimes experience.

My own experience with disability started when I was a child. My father was injured in a car accident and from that point on he used a wheelchair to get around. I, myself, have a disability, and two of my children who are now grown have developmental disabilities. For my familyand for most people with disabilities – disability, itself, has not been a barrier. Rather, societal attitudes and systemic exclusion are the real walls put in front of us. Things like stereotyping people with disabilities as inspirational and ‘special’, exclusion from school, long waiting lists for home- and community-based services, and limited options for employment prevent full participation in community life.  

The barriers my family and I have continuously faced have propelled me toward making change and into my work of nearly 30 years: grassroots organizing; serving people with developmental disabilities through home- and community-based services in Virginia; coordinating disaster relief and rescue for people with disabilities following hurricanes in Louisiana, Texas, and Puerto Rico; directing a center for independent living, and now leading the Administration on Disabilities (AoD) at ACL. At each step along the way, I have seen progress. The theme of Developmental Disability Awareness month is ‘Worlds Imagined’, and each day as I have viewed ACL’s social media posts on the topic, I remind myself that this progress must always be led by people with disabilities, through our own self-advocacy, and as members of a community of people with disabilities. Imagining a world that we want to live in is where we start, but action creates the pathways to community living.

I would like to highlight some innovative projects ACL, and particularly AoD, has engaged in over the last year and will build upon over the next year, that continue to take us from awareness and imagination to action and real access for people with developmental disabilities.

Click on the + by each topic to read more.

Equity, Diversity, and Inclusion

University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD) targeted technical assistance programs support incorporating the UCEDD Resource Centers’ Equity, Diversity, and Inclusion Action Plan in their daily work. Some examples of UCEDDs excelling this this area recently are:

  • Institute on Disabilities, Temple University: Developed authentic partnerships with other university centers serving underserved populations and launched an effort focused on improving equity through better data.
  • Center for Excellence in Developmental Disabilities at the University of California Davis MIND Institute: Updated mission statement to focus on cultural and linguistic relevance and revised workplan to infuse this change into each activity.
  • Center for Disabilities and Development, University of Iowa: Performed an environmental scan of what voices were being included and created a disability and diversity fellowship pathway to a more diverse workforce. 

In 2011, experts from across the nation convened to discuss support for people with DD and their families. This convening led ACL to invest in a community of practice that created changes in states to improve family support. Wingspread 2.0 will celebrate the accomplishments of the past 10 years and identify goals and strategies for the next 10 years. To ensure people with DD are not only at the table, but key participants in policy and access work, AoD is sponsoring self-advocates (and their direct support professionals, as needed) to travel to Wingspread 2.0, which is expected to take place later in 2022.

Addressing the COVID-19 Pandemic
  • Through a first of its kind partnership with the Centers for Disease Control and Prevention (CDC), ACL provided $17 million in funding for DD Councils, Centers for Independent Living (CILs), UCEDDs, and Protection and Advocacy Systems (P&As) to address the COVID-19 pandemic by educating people with vaccine hesitancy and increasing vaccine access for people with developmental disabilities. 
  • AoD used funding made available by the American Rescue plan to support DD Councils, P&As, UCEDDs, and CILs to engage in efforts to increase the public health workforce across the nation. This funding allows these AoD-supported agencies to hire public health workers and build awareness amongst public health systems about the needs of people with disabilities and accessibility related to COVID-19. 
  • In June 2021 ACL rolled out the Disability Information and Access Line (DIAL). DIAL offers a toll-free phone number and email to help people with disabilities get vaccinated, access COVID-19 tests, and connect callers to information, resources, and services that promote independent living and address fundamental needs, such as food, housing, and transportation. DIAL has supported more than 35,000 people since it’s launch. 
  • ACL is actively supporting the RadX process to create accessible home COVID-19 tests. Over the last few weeks, we have engaged with the National Institutes of Health in understanding what access might look like and in developing an interactive learning session during which people with disabilities provided input to inform creation of such tests. 
Achieving Economic Security and Mobility
  • In 2021, AoD made strategic investments to expand access to competitive integrated employment through a Prize Competition and technical assistance support to its grantees. In October 2021, AoD announced the winner of the Inclusive Talent Pipeline for American Business Prize Challenge. The winner of the prize challenge was awarded $100,000 to expand its inclusive technology recruitment platform to support employers and individuals with disabilities, particularly those with developmental disabilities. 
  • In September 2021, ACL continued its second-year investment of the AoD Disability Employment Technical Assistance Center: Transforming Networks through System Change, Innovation & Collaboration to support five AoD grantees in further expanding and sharing their knowledge, skills, and partnership strategies to improve alignment around a common goal to increase competitive, integrated employment.  
  • AoD’s Projects of National Significance program funded six Collaboration for Community Employment grants for UCEDDs in 2021. The UCEDDS will continue to strengthen their collaborative work in communities over the next four years to bolster competitive integrated employment. Some key outcomes to expand services to students and youth with DD and their families will make transition to college easier and smoother for people with DD by creating tools to increase communication and consistency between support systems.
The Caregiver Crisis

In October 2021, ACL launched the Blazing New Trails for Community-Based Direct Support Professionals prize challenge. The challenge sought innovative solutions to strengthen the direct support professional (DSP) workforce and increase the overall stability of home-and community-based services (HCBS) for individuals with intellectual and developmental disabilities (ID/DD).

After several phases of competition, The Collaborative for Citizen Directed Supports –  NJ won the grand prize for their development and testing of an interactive map tool that indicates where self-directed employees (SDEs) and Direct Support Professionals (DSPs) are located so that clients can contact them about their services. The tool now has a network of more than 700 people who share and promote the map and DSP support solutions. DSP agencies can submit lists of their available staff to the map, and SDEs can submit information about their staffing preferences. With their small-scale testing, The Collaborative for Citizen Directed Supports – NJ demonstrated that through proper formalized partnerships, effective marketing, and professional training, it is possible to increase the size and improve the stability of the DSP workforce, while also improving the capabilities of the DSP workforce.  

The President’s Committee for People with Intellectual Disabilities (PCPID)

In 1966, President Lyndon B. Johnson established The President’s Committee for People with Intellectual Disabilities (PCPID) to ensure the right of a “decent, dignified place in society” for people with intellectual disabilities. Since then, PCPID has served as a federal advisor to the President and the Secretary of Health and Human Services on matters relating to persons with intellectual disabilities. PCPID promotes policies and initiatives that support independence and lifelong community inclusion, and AoD/ACL provide oversight and support for PCPID.

On March 11, 2022, President Biden announced PCPID’s newest appointees. The committee will convene this year and will collectively collaborate to identify and address a systemic issue facing people with intellectual disabilities. This report will be published and presented to the President of the United States.

As we close out this month that celebrates and elevates people with developmental disabilities, I want to mention a just a few of AoD’s priorities over the next year. We will continue to address the DSP workforce crisis through a joint project within ACL. We will make investments in projects to advance equity and reach people with disabilities at the intersections of identity, and we will continue to focus efforts on supporting people who have both DD and mental health diagnoses.

I am honored to be in the role of AoD Commissioner. I take this responsibility very seriously and am energized and committed to moving us forward as an organization while focusing on actively engaging the true stakeholders: people with disabilities. I look forward to working together with our established grantees and partners and am excited to create new opportunities for collaboration. Let’s imagine and create new worlds together!

Last modified on 03/30/2022

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