map of the united states, filled in by various shades of blue figures

#becounted

Are you ready to be counted? The 2020 Census is coming up and it is critical for people with intellectual and developmental disabilities (I/DD) and their families. The census seeks to include every individual living in the United States, but many people with disabilities are historically left out of the countharmfully impacting funding, services, and supports.

Census data helps guide the distribution of more than $800 billion in federal funding. The count, conducted every 10 years, is also directly tied to key funding streams that support people with disabilities to live in the community, instead of institutions. It determines political representation and affects public policy, as well as programs and supports in housing, voting, education, health care, and public health. The Census Bureau recognizes people with disabilities as a hard-to-count population, meaning that they may not be fully represented in the count, and that the programs that are important to them may not receive the consideration they deserve.

The Arc is excited to announce a major initiative to find solutions. We are pleased to share that we have received a grant from the Ford Foundation to launch a project to help ensure that people with disabilities are counted in the 2020 Census. We recognize the Ford Foundation’s generosity and engagement in the fight for disability rights.

In planning for Census 2020, The Arc will develop and share materials to motivate and inform people with I/DD to respond to the count in order to produce more complete and fair data. Our outreach will include our chapter network and membership, and partnerships with national disability groups and advocacy organizations. 

The Arc has also joined the Census Bureau’s National Partnership Program to help raise awareness, share resources, and work together to ensure that all people are counted in 2020.

#becounted

All of our materials will be posted at thearc.org/census – please check back soon!

R. Baker

The Power of Belonging: A Community Comes Together

By Rachel Baker

R. Baker

Our community of Midland, Michigan, is a community that works hard to create inclusive opportunities for everyone. This past January, The Arc of Midland received a grant to organize and execute our first MLK Day of Service project. With the help of over 175 volunteers, we packaged and delivered food to over 1,000 people on one of the coldest days of the year.

The 175+ volunteers braved the cold to help direct traffic and deliver food. One man, Tom, came to receive food and ended up volunteering the entire day!

“I had no intentions of staying to help, but once I saw everyone working together to help people like me, I had to stay and be a part of giving back to the community that was giving to me.”

The Arc of Midland is lucky to be widely supported by many businesses, clubs, and organizations in our community that pitched in on this effort. The Great Lakes Loons (a local Minor League Baseball team) played host to the chapter’s Day of Service event. Not only does the team provide a safe, accessible, and welcoming environment for everyone to enjoy, but they also employ many people with disabilities throughout the year.

Another crucial partner was Hidden Harvest. Since 2016, we have partnered together through a variety of programs and projects—including a free pantry stocked weekly and supporting the community together when a fire ravaged an apartment complex where many people with disabilities and seniors lived. During this year’s MLK Day event, they provided food assistance, transportation, volunteers, and logistics for packaging of the food.

The Arc of Midland’s MLK Day work brought thousands of people together in service to build a stronger community. Together, every partnering organization, volunteer, and person receiving assistance honored Martin Luther King Jr. and his vision of belonging. 

MLK blog image

Get Into Inclusive Volunteering: Apply for a 2020 MLK Day of Service Grant

Inclusive volunteering is great for people and communities. When people give back together, they build friendships, practice their civic duty, learn skills they can use in the future, and help people in need.

But inclusive volunteering is not just a great idea for people—inclusive volunteering is a win for organizations. By developing inclusive volunteer activities, organizations show their dedication not just to their community, but also to supporting genuine inclusion for all members of their community, regardless of background or ability.This year, The Arc is once again partnering with the Corporation for National and Community Service to offer $5,000 and $10,000 grants to nonprofit community organizations to develop service projects that commemorate Dr. Martin Luther King, Jr. Projects must be designed for people with intellectual and developmental disabilities (I/DD) to volunteer alongside people without disabilities and should focus on providing food assistance to people in need in the community.

Over the past five years, The Arc has helped organizations across the country implement inclusive volunteering projects. They’ve seen firsthand the value of inclusive volunteering for the organization, with activities leading to new community partnerships and increased ability to reach new groups and service areas.

Is your organization ready to join them? Consider applying for a 2020 grant today!

Events must take place on MLK Day of Service in January 2020 and may continue through August 31, 2020.

Grantees will:

  • Partner with a service club to recruit volunteers with and without disabilities from diverse racial and ethnic backgrounds to participate in the project
  • Work with hunger-focused groups (e.g., community food banks, food pantries, soup kitchens) to deliver emergency food aid to people in need
  • Provide food aid on the MLK Day of Service and continue through the end of the grant (May 31, 2020)
  • Raise $31,000 ($10,00 grant) or $15,500 ($5,000 grant) in in-kind or cash matching funds to support the project

The application deadline is October 10 at 11:59 p.m. ET.

Request for Proposal (Word) | Request for Proposal (PDF)

Questions? Contact Jennifer Alexander at alexander@thearc.org.

New Video: Direct Support Professionals Need Our Support

The Arc celebrates “National Direct Support Professionals Recognition Week” beginning September 8, 2019. Direct support professionals (DSPs) play a fundamental role in the lives of people with disabilities. Their presence and assistance allow people receiving services to lead independent and full lives.

Direct support professionals help people with disabilities manage personal care, communication, household tasks, building relationships, and navigating the community. DSPs are invaluable to the disability community and the service systems that rely on their ability to keep people out of institutional settings.

But DSPs are paid low wages, and turnover is high. The result is a workforce crisis.

The *numbers are staggering for DSPs:

  • $11.76 average hourly wage
  • 15% of agencies provide DSPs with health insurance
  • 46% average state-wide turnover rate
  • 12% overall vacancy rate
  • 38% of DSPs left their position in less than 6 months

This workforce crisis has real-life impacts on DSPs and people with disabilities. Without consistent support from a well-paid and trained workforce, individuals with disabilities do not receive the proper services they need to live meaningful lives.

To better understand why DSPs need our support, watch our new video.

*National Core Indicators

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The Arc Condemns Change Targeting Sick Children and Adults

Washington, D.C. – The Arc is deeply concerned over a cruel federal policy shift that hurts families and immigrants with serious illnesses, certain disabilities, and other chronic health conditions. U.S. Citizenship and Immigration Services (USCIS) has eliminated a protection that allowed some immigrants with serious medical needs and their family members who care for them to stay in the country while receiving life-saving treatment. This change hurts people with multiple diagnoses or serious health needs, including individuals with cerebral palsy, epilepsy, muscular dystrophy, and other developmental disabilities, as well as cancer, HIV, and other diseases.

In addition, we are troubled USCIS ended the exemption, officially known as deferred action, without advance public notice or due process. The change creates turmoil, fear and potentially devastating consequences for people who are facing serious medical illness and their families. Some health care providers have also expressed strong opposition to the change.

 “The lives of sick children and adults with developmental disabilities are in danger. Some families will forego necessary medical treatment to stay in the U.S. or face deportation to countries where they cannot receive the care they need – a death sentence,” said Peter Berns, CEO, The Arc. “We urge USCIS to reverse course immediately.”

In a letter to USCIS, The Arc and more than 150 advocacy organizations and legal groups called on the agency to reverse this inhumane and unfair shift in policy.

The Arc urges Congress to hold USCIS accountable. We will pay close attention to the upcoming  House Oversight Subcommittee on Civil Rights and Civil Liberties hearing on the issue, scheduled for Wednesday, September 11. All people with intellectual and developmental disabilities are entitled to human and civil rights.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 600 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

Public Charge Amicus Brief

Disability Advocacy Groups File Amicus Brief Opposing the Administration’s Public Charge Rule as Illegal Disability Discrimination

The Arc and seventeen other national disability advocacy groups represented by the global law firm Latham & Watkins filed an amicus brief in support of litigation to stop the U.S. Department of Homeland Security (DHS) from implementing its new “public  charge” rule. Twenty-one states, led by California, Washington, and New York, have filed cases against the Trump Administration to block the new rule. The advocacy groups – representing tens of thousands of people with disabilities and their families across the country – claim that the new public charge rule will prevent people with disabilities from entering this country or becoming legal residents in violation of federal disability law. 

“The new public charge rule is based on an insidious and outdated notion that people with disabilities do not have a valued place in American society,” said Alison Barkoff, Director of Advocacy for the Center for Public Representation. “Almost 30 years ago, Congress removed the per se exclusion of immigrants with disabilities, recognizing the discrimination and prejudice these policies embodied. In the following years, Congress has repeatedly legislated its commitment to include and integrate people with disabilities in all aspects of life. This new rule flies in the face of that progress and federal law.”

“The new rule punishes immigrants who use Medicaid, even though Medicaid is the only way to access critical disability services,” said Claudia Center, Senior Staff Attorney with the American Civil Liberties Union. “Congress has explicitly recognized the importance of Medicaid in enabling people with disabilities to be productive, contributing members of society. Studies show that access to Medicaid increases employment for people with disabilities. That is the opposite of a public charge.”

“This new policy is devastating to many people with intellectual and developmental disabilities and their families. It discourages immigrant families from utilizing critical public services out of fear of harming their immigration status. The rule will increase poverty, hurt public health, and worsen housing instability. It’s the latest callous tactic in restricting access to necessary services and supports. The Arc continues our work to ensure that non-citizens with any type of disability have a fair opportunity to enter and reside legally in the U.S., without unnecessary or discriminatory restrictions based on their disability,” said Peter Berns, CEO of The Arc.

“We are proud to represent the disability community in this important litigation,” said Sarah Ray, a partner with the global law firm Latham & Watkins. “Our public interest organization partners across the disability and immigration sectors report that this new rule is causing serious fear and confusion among immigrants – especially those with disabilities and those whose family members have disabilities. This rule violates federal law and must be stopped before it goes into effect on October 15th.”

For more information about the public charge rule and its impact on people with disabilities, see www.medicaid.publicrep.org/feature/public-charge/ or www.protectingimmigrantfamilies.org.

Media contacts:

Kristen McKiernan, The Arc

202-534-3712, mckiernan@thearc.org

Lauren Weiner, American Civil Liberties Union

212-549-2666, media@aclu.org

Alison Barkoff, Center for Public Representation

202-854-1270, abarkoff@cpr-us.org

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 600 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

Marca Bristo

Marca Bristo, a Powerful Advocate for People With Disabilities, Dies at 66

The Arc mourns the loss of Marca Bristo, a remarkable champion in the fight for disability rights. Bristo died Sunday after a battle with cancer.

We are grateful for Bristo’s leadership in helping to pass the Americans with Disabilities Act, our nation’s major step forward in disability rights. Almost 30 years later, the historic progress made by the ADA remains critical in ongoing efforts to ensure that people with disabilities are included in society in ways that are accessible and fair. Bristo, who became paralyzed in an accident at the age of 23, also founded Access Living in Chicago and the National Council on Independent Living. The Arc has worked with Bristo and her organizations over the last several decades to advance our shared core values of independent living for people with disabilities, and their rights.

Sadly, we have lost a role model and leader in our community. Bristo’s vision and devotion to changing the perception of how this country sees disability continue to shape our society for the better. Her relentless advocacy at the local and national levels were instrumental in realizing many of the rights people with disabilities have today – and we celebrate her life and commitment. Bristo was 66. Please take the time to read these news pieces about her impactful life: The New York Times and Chicago Sun-Times.

A Call to Action: We Must Do Better for People With I/DD and Mental Health Needs

By Jennifer Alexander and Katy Schmid

Up to 40% of people with intellectual and developmental disabilities (I/DD) experience co-occurring mental illness. As a former direct care worker and special educator, we both had seen firsthand many issues that people with I/DD and mental health needs faced in our work. Even still, we were unprepared for the level of need our journey revealed.

Through grants with partners Boston UniversitySelf Advocates Becoming Empowered, and the Family Support Research and Training Center at the University of Illinois at Chicago, we met with people with I/DD and mental health needs, families, and disability, education, and mental health professionals.

In meetings around the country and through a nationwide survey, we heard people share stories, challenges, and tears.

Here are some of the heartbreaking stories that we heard (you can find more takeaways and trends in this brief). They serve as a call to action that we can—and must—do better and work together to make the world better for people with I/DD and mental health needs and their families.

“People think that we are bad people, that our family members are bad people.”

People with I/DD and mental health needs and their families often felt that people did not understand them or were judging them when they would talk to others in the community. They felt that others may not believe or value them when they shared about their life. They also felt that they would be judged for any crises or situations that may occur. Even when they would go to mental health or I/DD support groups, they felt other members did not understand what they were feeling or going through. People with I/DD and mental health needs and their families reported feeling lonely and isolated, with very few people to rely on for social or emotional support.

“I went to one therapist and I talked to them about all of the anger that I had…Instead of supporting me…he attacked me.”

Disability, mental health, and education professionals frequently lack training or knowledge around I/DD and mental health needs. Professionals may know how to support people with either I/DD or mental health needs, but often do not know how to support people with both concerns. Many with I/DD and mental health needs feel like they do not get adequate support from professionals because they do not know promising practices or how to tailor services. People with I/DD and mental health needs and their families also feel that professionals may also set unrealistic goals or targets for families because they don’t understand what a family’s real life is like each day. Several participants also expressed that professionals will refuse to provide services to a person because of their dual diagnosis.

“We don’t have the services and support we need. We are waiting for the next crisis to occur.”

People with I/DD and mental health needs often end up in a cycle of hospitalization, a return to home, and re-hospitalization. This may occur for several reasons: they may have experienced additional trauma in the hospital, they did not get the right support in the hospital, or there may be no step-down supports available and accessible to people with I/DD and mental health needs after hospitalization. Many families reported that they often feel that they are in a continual crisis cycle and that they have no way to escape this pattern because of a lack of effective supports.

“Instead of helping us, the systems fight each other about who will pay.”

Both the disability and mental health systems are extremely complicated to work with and navigate. People with I/DD and mental health needs and their families often struggle to identify resources or services in each system, to determine whether they are eligible for services, and to understand whether insurance will pay for the services a person and family need.

This is made more complicated by the way these systems determine who will pay for the services. The disability and mental health systems do not often talk with each other to determine eligibility and payment. Frequently, the family feels caught in the debate about which system will pay for services. The result: long wait times to receive services and having to pay out of pocket.

We Must do Better: A Call to Action

In addition to the challenges that were shared during our sessions, people with I/DD and mental health needs, their families, and professionals also shared their expertise with us on what our society do to better support them. They identified the following activities:

  • Develop trainings—most notably a nationwide, replicable training around I/DD and mental health for disability, education, and mental health professionals.
  • Support systems change activities that improve navigation and communication between the I/DD and mental health systems.
  • Support research to further develop evidence-based mental health treatments for this population.
  • Support the development of programs to improve access to quality mental health care (regardless of insurance status).
  • Develop and improve access to support groups for people with I/DD and mental health needs and their families to help them avoid feelings of isolation and loneliness.
  • Create public awareness campaigns to counteract stigma and misconceptions around I/DD and mental health needs.

READ THE FULL BRIEF

This summer, The Arc held focus groups in Florida, Indiana, and Maryland with professionals in the disability, education, and mental health fields. These focus groups lead us to develop further recommendations around this national training. We plan to release an updated brief this fall with these recommendations.

We also hope to continue to work around the country with the incredible people, families, professionals, research groups, and training centers that are dedicated to advancing the effort to support these families. Together, we can work together to help the people with I/DD and mental health needs and their families nationwide.

The Arc logo

New Videos from The Arc Spotlight Need to Close Institutions, Support Community Living

In 2019, 37 states still have institutions where people with intellectual and developmental (I/DD) live away from their families and communities. Some may recall the horrible investigative reports over the last few decades that showed the terrible conditions in institutions, but many people fail to realize the facilities still exist and that state and federal dollars are still funding them. The Arc of the United States was founded by families trying to eliminate the need for those institutions and to get their family members with disabilities back home and included in their communities. While we have come a long way, there remains much to be done from state capitals to our nation’s capital.

The Arc developed this video to highlight the issue and to educate the general public about institutions, and to urge action to close the remaining institutions and support people with disabilities, no matter their level of need, back into the community.

At The Arc we also understand that it is more important than ever that we educate the general public about why inclusion and acceptance matters and that they join the fight to ensure that the progress that we have made as a disability community is not stalled.

We have to talk about the fact that institutions remain open, and how those dollars would be better spent in the community. We have to educate the general public about how Medicaid makes life in the community possible. We have to protect Medicaid from threats of cuts and caps that would drastically hurt people with I/DD.

To illustrate community living, check out our new video.

On the policy front, we have to talk to state and federal legislators about the fact that the federal Medicaid law that we fought so hard to save just a few years ago needs a face lift. Right now, services in institutions, nursing homes and other more segregated settings are mandatory while home and community-based services (HCBS) are optional under the law.

These are complex issues, but the basic fact remains everybody benefits when people with disabilities are part of the fabric of their communities. That doesn’t come by keeping people locked away in institutions – it comes through conversation, inclusion and acceptance that we are all better together.