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The National Association of Councils on Developmental Disabilities

NACDD is the national association for the 56 Councils on Developmental Disabilities (DD Councils) across the United States and its territories. The DD Councils receive federal funding to support programs that promote self-determination, integration and inclusion for all people in the United States with developmental disabilities.

THE ROLE OF NACDD

  • To provide technical assistance to all DD Councils
  • To advocate for the national public policy agenda
  • To advocate for DD Councils’ appropriations in Congress
  • To convene DD Councils for leadership and development training

NACDD Mourns the Passing of Senator Harry Reid

The National Association of Councils on Developmental Disabilities (NACDD) mourns the recent passing of Senator Harry Reid, a true leader who served as the United States Senator from Nevada from 1987 to 2017. Senator Reid worked hard to deliver on so many promises like the Affordable Care Act, ensuring that all people had access to health insurance. In addition to being a prominent Senator, he rose in the ranks to become Chairman of the Democratic Caucus in 2005 and Senate Majority Leader from 2007-2015, covering all of the Obama White House years. He will be remembered as an honest broker and forthright person from humble roots who always tried to see the good in people and solve problems for those in need, including people with disabilities.

“Senator Reid was an amazing politician who really cared about people. I remember a time when I was doing Partners in Policymaking training in Henderson, Nevada and Senator Reid came to join us on a weekend afternoon in his khakis and shirtsleeves. He spent a few hours with the students practicing how to have a good visit with a Member of Congress. Citizen advocacy and equality for all people, including those with disabilities, was very important to him – titles and fame were not. He was a legend in Congress and will forever be missed” said Donna Meltzer, CEO of the National Association of Councils on Developmental Disabilities.

We mourn his passing and share our deepest condolences with his beloved wife and family. Senator Reid leaves behind an extraordinary legacy of patriotism and leadership that will leave its’ mark on both Congress and the country for decades to come.

NACDD Mourns the Passing of Dr. Margaret Giannini

NACDD has just learned that a great pioneer of the DD world has died. Dr. Margaret (Peg) Giannini, who began her esteemed work in the field of I/DD in the early 1960s established what became the first University-based program (later the Westchester Institute on Human Development, one of NY’s 3 UCEDDs) and dedicated her entire career to supporting individuals with I/DD and their families to live healthy lives in the community. She continued working in the field until the day she died just before Thanksgiving. I had the honor and privilege to work a little with her in the early 2000s when she was appointed by President George W. Bush to serve as the principal deputy assistant secretary for aging at the Department of Health and Human Services. There she got to know Tommy Thompson, the secretary of the department, who appointed her director of the department’s office on disability in 2002. She was a huge support to our work in the I/DD community helping us focus on implementing the newly reauthorized DD Act of 2000.

May she rest in peace and may her memory continue to push us forward in the work we all do helping people with I/DD, their families and caregivers to live their best life in the community.

For more information, click here.

NACDD Mourns the Passing of Senator Bob Dole

The National Association of Councils on Developmental Disabilities (NACDD) mourns the passing of Senator Bob Dole, a great leader of the U.S. Senate representing the State of Kansas and all Americans as he ably served as Leader of the Senate from 1985-1996. Senator Dole dedicated much of his work to issues he was truly passionate about – most notably, disability rights. As a wounded veteran of WWII, Senator Dole understood that people with disabilities of all types were viewed differently in our nation and that knowledge drove him to be a strong supporter of the 1990 Americans with Disabilities Act (ADA). Dole’s work to move the ADA through the Senate and on to the White House was instrumental and helped to make the process truly bipartisan. Senator Dole went on to create a legacy of support for disability rights in the U.S. and abroad. He worked tirelessly toward his vision that the U.S. should lead the way for the world in advancing equality, justice, and dignity for people with disabilities. He was dealt a blow when Congress failed to ratify the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) but he didn’t let that stop him. His work supporting the rights of people with disabilities continued in the U.S. and abroad as he worked particularly on behalf of disabled veterans stationed in foreign countries.

Senator Dole prioritized people with disabilities and ensured that they were kept in the forefront by creating foundations, including his own eponymous Dole Foundation, and organizations including the American Association of People With Disabilities (AAPD) where he could continue advocating for the disabled.

We mourn the passing of this great man and share our deepest our condolences with his beloved wife and family. NACDD hopes his leadership in Congress reminds all that we must ensure that every voice is heard and continue the hard work of defending the rights and inclusion of people with disabilities.

NACDD Statement on National Family Caregiver Month

As the month of November commences, the National Association of Councils on Developmental Disabilities (NACDD) celebrates National Family Caregivers Month (NFCM). NACDD recognizes the critical role that caregivers take on every day and as they work tirelessly on behalf of their community and loved ones. NCFM is a time to recognize and honor family caregivers across the country. It offers an opportunity to raise awareness of caregiving issues, educate communities, and increase support for caregivers.

In 1997, President Clinton proclaimed November to be National Family Caregivers Month for the first time. There are approximately 2.9 million family caregivers of individuals with I/DD in the U.S. According to the Arc’s Family and Individual Needs for Disability Supports (FINDS) survey, most of these family caregivers provide more than 40 hours of care per week, including the 40% who provide more than 80 hours of care per week. According to a 2020 survey by Mental Health America, the need for caregivers is expected to continue to grow as the US older adult population increases. The demands of caregiving can take a significant toll on those providing care — physically, emotionally, and financially. As more care is provided in the home, rather than in medical facilities, these challenges are likely to increase. It is imperative that caregivers continue to receive the support they need to be able to help take care of both themselves and their loved ones.

According to an August 2017 paper written by UnitedHealthcare Community and State, there are an estimated 43 million family caregivers nationwide providing support or assistance for loved ones with acute, chronic and/or disabling health conditions. Family members or friends are often called upon to provide care for children, particularly if they have a disability, or for a spouse, a parent, or a sibling with a disability or serious illness.

To help honor caregivers this month, various organizations have created various events and activities.” To check out all events held this month, check out organizations like Mental Health America and Caregiver Action Network.

NACDD Supports President Biden’s Framework for Disability Provisions in the Build Back Better Act 

The National Association of Councils on Developmental Disabilities applauds President Biden’s historic Build Back Better Act framework that prioritizes $150 billion in funding for home and community-based services (HCBS) provided through Medicaid. HCBS provides opportunities for Medicaid beneficiaries to receive services in their own home or community rather than institutions or other isolated settings. HCBS is necessary for many people with disabilities so they can live, work, learn and participate fully in the community.    

Although the Americans with Disabilities Act and the Supreme Court Olmstead decision promised people with disabilities the right to participate fully in the community, even today thousands of people with disabilities languish on waiting lists for the long-term supports and services they need to live independently.   

“Congress has lagged behind in funding Medicaid HCBS at levels necessary to realize the ADA promise of community integration for people with disabilities,” said Donna Meltzer, CEO, NACDD. “The Build Back Better framework announced by the President today lays out how Congress can finally deliver for people with disabilities so they can live independently. Congress must seize the opportunity to follow the framework contained in President Biden’s framework to advance access to independent living for people with disabilities.”   

State Councils on Developmental Disabilities across the nation advocate for increased home and community services for people with intellectual and developmental disabilities so they can live the best life in their own homes and engage in the workforce, receive an education, and participate in civic engagement opportunities.   

NACDD Celebrates National Disability Employment Awareness Month

As we mark the halfway point of National Disability Employment Awareness Month (NDEAM), NACDD celebrates NDEAM as it brings people with disabilities into the forefront of the workforce conversation, ensuring that their voices are heard. The theme for NDEAM 2021, “America’s Recovery: Powered by Inclusion,” reflects the value in ensuring that people with disabilities have full access to employment and community involvement during the national recovery from the COVID-19 pandemic.

The roots of this month date back to 1945 when Congress enacted a law declaring the first week in October to be “National Employ the Physically Handicapped Week”. In 1988, Congress expanded the week to a month and changed the name to “National Disability Employment Awareness Month.” Since then, the US Department of Labor has created the Office of Disability Employment Policy (ODEP) to ensure that people with disabilities are seen as valued members of the labor force and have the resources necessary to be outstanding employees.

Beth Swedeen, Executive Director of the Wisconsin Board for People with Developmental Disabilities, said, “National Disability Employment Awareness Month (NDEAM) is a time to celebrate the contributions people with disabilities bring to the workplace as valued employees and colleagues. DD Councils are key champions of NDEAM as developers and supporters of disability employment policy, storytellers who share the employment successes of people with disabilities, and as grassroots organizers that help communities see and expand opportunities for people with disabilities to showcase their strengths and abilities.” She further added that in Wisconsin, their DD Council has brought together youth with disabilities, families, providers, and entire communities to recognize the unique advantages of hiring and retaining early-career employees with disabilities. As a result, Wisconsin has seen employment rates of youth in our efforts triple within a year.”

To learn more about what your State/Territorial Council on Developmental Disabilities is doing to support employment opportunities, click here.

To celebrate the milestones and month, the DOL has created various events and activities with the theme “Increasing Access and Opportunity.” To check out all events held this month, click here.

NACDD Celebrates National Hispanic Heritage Month

The National Association of Councils on Developmental Disabilities (NACDD) celebrates National Hispanic Heritage Month, recognizing the contributions made and the presence of Hispanic and Latino Americans, and celebrates their heritage and culture.

Congress established National Hispanic Heritage Month in 1988, from September 15 to October 15 in recognition of the pivotal contributions and legacy of the Latino community that traces its roots to Mexico, Central America, South America, the Caribbean, and farther beyond. Latinx have done so much to support and make the United States of America what it is today. For NACDD, this celebration also includes the 5.1 million Latinx living with a disability in the country.

According to the Annual Disability Statistics Compendium released in 2020, which compiles data collected by the U.S. Census Bureau, showed that in 39.4 percent of working-age Latinx people with disabilities had jobs, compared to 76 percent of Latinx people without disabilities. When it comes to the Hispanic population in the U.S., they are the second-fastest growing group in the country with 60.6 million as of July 1, 2019.

It is critical we also recognize and thank those in the Hispanic and Latinx community that are part of our front line workers. Every day, front line workers help conduct a range of operations and services that are typically essential to our critical everyday lives. The industries that many in these communities’ support represent medical and healthcare, telecommunications, food and agriculture, as well – public works. According to American Community Survey, essential workers represent nearly 70 percent of all workers with the Hispanic Community making up the second largest block of essential workers, primarily in the healthcare and agriculture sectors. This has been a difficult time with the pandemic, asking more of these communities who have risked their lives and have worked tirelessly to make sure others are safe and taken care of.

Therefore, during National Hispanic Heritage Month, we continue to celebrate this community’s countless contributions, dedication and fortitude, but not necessarily as something new. The American story is incomplete without the vibrant and enduring history of the Latinx and Hispanic community. So, we must continue our efforts because this is a unique time and place for them to use their our voice, to share their stories, and continue educating people about both visible and invisible disabilities in the Latinx community.

NACDD Statement on Bipartisan Infrastructure Deal

“The Bipartisan Infrastructure deal is a big deal for people with developmental and intellectual disabilities,” said Erin Prangley, Director of Policy, National Association of Councils on Developmental Disabilities. “This historic investment in clean energy, clean drinking water, and other measures is a necessary step to mitigate systemic health disparities among people with intellectual and developmental disabilities including the occurrence of secondary conditions caused by exposure to pollutants.”  

Approximately 1 in 6 children in the United States has a developmental disability which includes physical or mental impairments that begin before age 22 and are likely to continue indefinitely. The Centers for Disease Control and Prevention state the specific cause of most developmental disabilities is unknown and may result from an interaction between genetic, environmental, and social factors. While negative health outcomes are associated with exposure to certain pollutants for everyone, this is especially for people with intellectual and developmental disabilities who are more likely to have pre-existing health conditions and lower incomes making them more susceptible to negative health outcomes due to exposure to pollutants 

“This deal promises a cleaner environment which will lead to better health outcomes for people with intellectual and developmental disabilities,” said Ms. Prangley. “By reducing exposure to harmful chemicals, air pollution, and other man-made drivers of climate change, we are taking a step in the direction which could lower incidence of intellectual and developmental disabilities and most importantly, provide a safer, cleaner environment for people with intellectual and developmental disabilities so they can live their fullest lives in the community.” 

NACDD Mourns the passing of Senators Mike Enzi and Carl Levin

The National Association of Councils on Developmental Disabilities (NACDD) is saddened by the passing of two stalwart members of the United States Senate. Both Michigan Senator Carl Levin (Democrat) and Wyoming Senator Mike Enzi (Republican) worked tirelessly to protect people and ensure that all Americans had the best opportunities for a healthy and successful life.  Both were bipartisan leaders who put people first and both had a deep caring for people with disabilities and chronic health conditions.

Senator Enzi, who served from 1997 – 2021 served as Chair of the Senate Committee on Health, Education, Labor, and Pension (HELP) from 2005-2007. It was in this role that he really stepped forward to ensure that people with disabilities were getting the supports they needed to live a healthy life. Senator Enzi agree to have a Disability Policy Fellow from the Joseph P. Kennedy, Jr. Foundation work in his office who would advise him and his committee on the needs of people with disabilities. This JPK Fellow was Aaron Bishop, who later became Commissioner of the Administration on Disabilities (AoD).

Senator Levin, who served from 1979 – 2015 was a great leader of Civil Rights for all people and put most of his efforts into supporting our military and veterans. As Chairman of the Senate Armed Services Committee, Senator Levin brought principle and patriotism to his work, understanding that America’s strength is found not only in our military might, but in our faithfulness to our values. He believed that government can and should play a strong role in supporting people to live their best life, and he was known to hold his congressional colleagues accountable for ensuring that government was doing its job supporting the people of this nation.

We mourn the passing of these two congressional giants and our condolences go out to their friends and families. NACDD hopes that their leadership in congress reminds all that we too must ensure that every voice counts.

NACDD Celebrates the 31st Anniversary of the Americans with Disabilities Act

The National Association of Councils on Developmental Disabilities (NACDD) is proud to celebrate the 31st anniversary of the Americans with Disabilities Act. The ADA, passed and signed into law on July 26, 1990, was our nation’s seminal law that finally said that people with disabilities are equal citizens of our country and therefore deserving of legal protections.

The ADA remains the backbone for much needed societal and attitudinal change toward people with disabilities. President George H.W. Bush, who signed the bill into law, praised the Act as “the world’s first comprehensive declaration of the equality for people with disabilities, and marked it another Independence Day – one that is long overdue.” The ADA has guaranteed access to public venues, employment opportunities, housing options, more accessible roads, curb cuts and transportation. The ADA has redefined the importance of community and living where we choose in order to live our best life.

Sadly, each year we continue to see threats made to the ADA through congressional legislation, and lack of understanding by others who do not know that the ADA means that people are entitled to services and supports to help them navigate and fully access their community. The ADA helped us to think more about universal design – a term that means that when we design sidewalks, buildings, homes, and other parts of our community to be accessible for those with disabilities, we are creating the best communities for all. The “curb-cut effect” means that not only do curb-cuts help those who use wheelchairs, but also parents with baby strollers, people with skateboards, delivery personnel with dollies, and elderly people with canes or walkers. In other words, we all benefit from such universal design and consideration of those with disabilities.

But the ADA is about more than just accessibility to physical spaces. It is about equal opportunities for meaningful employment, the right to participate equally in civic responsibilities such as voting for our elected officials, and the right to live where we choose and with whom we choose. Over the last few years, we have experienced significant threats to many of these rights codified in law 31 years ago. The right to vote is under threat in the United States – especially for people with disabilities. NACDD’s web-based voting resource www.onevotenow.org serves as a resource to help people with disabilities know their rights, important information about how to register to vote and important deadlines in their state or territory. OVN is here to help make sure that everyone can exercise their right to vote and that all elections are accessible.

Additionally, the ADA reminds us that we have the right to be healthy and live safely. This includes the right to a COVID-19 vaccine administered in a culturally competent and accessible setting. NACDD’s webpage www.getoutthevaccine.org includes resources and information to help people with disabilities get the vaccine wherever they are and NACDD is proud to partner with its 56 State and Territorial DD Councils to ensure that all who want the vaccine are able to get it.

“On this 31st Anniversary, I am reminded that these rights have not been with us all that long,” said Donna Meltzer, CEO of NACDD, “we have seen many rights eroded over the years and threats to voting and access to important community services and health care are constantly under attack. On this 31st anniversary let us reflect on this short history of the ADA and re-dedicate ourselves to protecting the ADA and civil rights for all.”

The National Association of Councils on Developmental Disabilities (NACDD) Supports the Introduction of the Transition to Competetive and Integrated Employment Act

Washington, D.C. – Today, the National Association of Councils on Developmental Disabilities (NACDD) expressed its strong support for the Transformation to Competitive Employment Act, which provides states, service providers, subminimum wage certificate holders, and other agencies with the resources to help workers with disabilities transition into competitive, integrated employment.

“By introducing TCIE, Representatives Bobby Scott and Cathy McMorris Rodgers have shown extraordinary bipartisan leadership to once and for all end the antiquated and unconscionable practice of paying people with disabilities less than minimum wage,” said Donna Meltzer, CEO, NACDD. “We need TCIE to make sure that workers in sheltered workshops receive the support they deserve to reach their employment goals, attain greater financial security, and be paid the same wages for the same work as their co-workers both with and without disabilities. To do this we must provide support for the providers and states who need to do the hard work transforming their business model so no one is left behind.”  

Since 1938, Section 14(c) of the Fair Labor Standards Act authorizes employers, after receiving a certificate from the Wage and Hour Division, to pay wages less than the Federal minimum wage to workers who have disabilities. Originally envisioned to give training to people with disabilities to build employable skills, over time it has become a way to segregate people with disabilities and deny them fair wages.  

“Thirty years ago, we passed the Americans with Disabilities Act giving everyone an equal right to the American dream which should have ended this practice of employment discrimination. This 1938 law is inconsistent with current disability law and we must end this practice now,” said Steve Gieber, Executive Director for the Kansas Council on Developmental Disabilities. “To end this misguided practice will require additional resources for providers and the states to make sure workers with disabilities have the support they need to transition to the jobs they deserve.”    

Many states have moved to end the practice of paying subminimum wage and funneling workers with disabilities into segregated assembly line work regardless of the workers desires and economic needs. New Hampshire, Maryland, Alaska and Oregon have enacted policies to eliminate this unfair labor practice, and many other states have similar legislation pending.  

“Workers with disabilities want real jobs making real wages alongside their peers without disabilities.,” said Rachel London, Executive Director for the Maryland Developmental Disabilities Council. “It is not their choice to be paid less than other workers. This federal legislation will help all states do the right thing and end 14(c) for good.”  

For more information, please contact Erin Prangley at eprangley@nacdd.org or (818)456-6517.  

NACDD Launches #GOTVaccine Campaign Encouraging People with Intellectual and Developmental Disabilities to Get Vaccinated

GetOutTheVaccine.org Provides Resources on COVID-19 Vaccinations

WASHINGTON – Today, the National Association of Councils on Developmental Disabilities (NACDD) debuted the Get Out The Vaccine website and called on people with intellectual and developmental disabilities (I/DD), their loved ones, and caregivers to learn more about the COVID-19 vaccines. On GetOutTheVaccine.org people with I/DD can find trusted resources and information on finding the COVID-19 vaccine in their area. The pandemic has altered the lives of many and while vaccines offer protection against the virus, people with disabilities may be feeling anxious or unsure about the vaccine and its safety. NACDD is providing the site GetOutTheVaccine.org to help quell the anxieties about the vaccine and provide trusted, reliable, factual information for users.   

Donna Meltzer, CEO of NACDD stated, “we want people with disabilities to get back to living their fullest lives. So many people have been isolated from their friends, families, coworkers and their community because of this pandemic. The way to safely re-enter the community is to ensure you and the people around you are vaccinated. We hope people with disabilities, their families, caregivers, and Direct Support Professionals who work closely with people every day will take the steps necessary to protect themselves and each other from COVID.”

“We want our community to understand the benefits of the vaccine and feel empowered to make the decision to get vaccinated on their own,” continued Meltzer. “The entire process of getting access and information on the vaccine can be overwhelming. People with I/DD are also facing transportation and internet access problems which can keep them from getting an appointment for a vaccine. Councils across the nation are advocating for greater access to the technology and working across communities to solve transportation problems to help get more people to vaccine sites. We hope GetOutTheVaccine.org will give people high-quality information from trusted sources, so they and their families can make the right decisions for themselves.” 

“I am excited that NACDD has launched GetOutTheVaccine.org. I know when I was questioning whether to get the vaccine that finding trusted sources was very important to me and my family,” said Emmanuel Jenkins. “Now, others can use this site to learn about COVID-19 vaccines and find out where they can be vaccinated in their community.”

If you have questions about vaccine safety, we encourage you to visit GetOutTheVaccine.org and watch the NACDD Vaccine Safety Education Webinar on Facebook.

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GOTVaccine is a project of the National Association of Councils on Developmental Disabilities (NACDD). NACDD is the national association for the 56 Councils on Developmental Disabilities (DD Councils) across the United States and its territories. The DD Councils receive federal funding to support programs that promote self-determination, integration, and inclusion for all people in the United States with developmental disabilities. Follow the conversation on Twitter, Facebook and Instagram at #GOTVaccine. 

One Vote Now

This National Disability Voter Registration Week, we are so excited to re-launch One Vote Now, our resource website on voting and the Presidential Election. OneVoteNow.org is here to help make sure you can exercise your right to vote because nothing should block your ability to participate in our democracy. Elections should be equally accessible for all Americans—including the disability community. Elections are more fair when they represent all of us.  Press Release

Sponsors

NACDD would like to thank our sponsors for their support and partnerships.