Washington, D.C. – In a series of critical meetings this week, The Arc will take important steps in urging the U.S. Department of Health and Human Services (HHS) to address the caregiver crisis facing millions of families. Nancy Murray, President of The Arc of Greater Pittsburgh at ACHIEVA, and James Cheely, President of The Arc of Barren County, Kentucky serve on the newly-formed RAISE Family Caregiving Advisory Council. The Council meets for the first time on Wednesday, August 28 and Thursday, August 29 in Washington, D.C. to develop recommendations to HHS Secretary Alex Azar.

Murray, who is co-chair of the Council, and Cheely bring a deep personal and professional understanding of the caregiver crisis for families and people with intellectual and development disabilities (I/DD). Murray is the mother of two adult children with Down syndrome and was a caregiver to both of her aging parents. Cheely has a son with I/DD. He is also a former president of The Arc of Kentucky.

“The RAISE Family Caregiving Advisory Council has been charged with a huge task.  I am honored and excited to be a part of it,” said Cheely. “I am looking forward to representing families of The Arc in these discussions.”

Murray and Cheely are available to speak about the growing national caregiving crisis and efforts to alleviate it.

“I am honored to be selected to be a member of the new Family Caregiving Advisory Council and to create awareness of the vital role that family caregivers play in the United States. At one time or another, many, if not most Americans, become a caregiver for an elderly parent, child with a disability, or spouse with a disability or illness,” said Murray. “We need to increase and strengthen the resources and supports for family caregivers. One possible solution to help ease the crisis is a federal paid leave policy.”

Less than half of caregivers reported having paid leave in The Arc’s Family & Individual Needs for Disability Supports (FINDS) 2017 Survey. The survey reflects the true extent of the crisis and the need for change.

The Council was established by the RAISE Family Caregivers Act enacted last year to help HHS address the caregiver crisis for family members and persons with I/DD, seniors, veterans, and others. Senators Susan Collins of Maine, Lisa Murkowski of Alaska, and Michael Bennet of Colorado were original sponsors of the legislation. Florida Rep. Kathy Castor and New York Rep. Elise Stefanik originally sponsored the House version of the bill.

 

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.

 

Washington, DC – The Arc, the nation’s largest civil rights organization for people with intellectual and developmental disabilities (I/DD), which was founded by parents and family members who rejected institutions and fought for decades to close them, released the following statement on President Trump’s comments about creating new institutions for people with mental health needs.

“The Arc and our constituents are all too familiar with calls to reopen the institutions of the past, where people with all different disabilities were imprisoned against their wills and subject to horrific torture and abuse. For nearly 70 years, The Arc has focused on advocating for deinstitutionalization to ensure that people with intellectual and developmental disabilities, and other disabilities, can live meaningful, independent lives in the communities of their choice among their families and peers, with accompanying supports and services.

“We have spent decades building the community services we need and we still have so far to go to ensure that people with all disabilities, but especially those with dual diagnoses of I/DD and mental illness, have access to the critical services they require to support community living.

“People with I/DD and mental illness are far more likely to be victims of violent crime than perpetrators of it. The misguided idea that mental illness causes violence is inaccurate, harmful, and discriminatory to the disability community.

“Re-institutionalization would bring people with disabilities back into the dark ages of isolation and segregation. Nearly 30 years after the enactment of the Americans with Disabilities Act and its ‘integration mandate’, we have come so far. Yet 37 states still have institutions, and these comments impede our progress. Clearly, we have more work to do, and encourage people to join our efforts to build a world where people with disabilities do not face this harmful stereotyping,” said Peter Berns, CEO, The Arc.

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.

Washington, DC – Local and national disability advocacy organizations have filed three complaints with the West Virginia Department of Education alleging widespread failures by Kanawha County Schools (KCS) to educate children with disabilities, including autism, intellectual or developmental disabilities, mental health concerns, and Attention Deficit Hyperactivity Disorder (ADHD). Specifically, the groups assert that KCS—the public school district serving Charleston, West Virginia’s state capital, and its environs—has failed to provide behavioral and academic supports to students with disabilities and are instead segregating them into separate schools and classrooms, or sending them home because KCS schools will not educate them. The advocates—Disability Rights of West Virginia, Mountain State Justice, The Arc, and the Bazelon Center for Mental Health Law, along with the global law firm Latham & Watkins LLP—allege that KCS has violated federal laws protecting students with disabilities.

“Students with disabilities and behavioral support needs can thrive in school, graduate with diplomas, and transition to successful adulthood provided they receive the appropriate supports to which they are entitled under federal law. It is critical that KCS take responsibility for teaching all of its students, not just some,” said Jeremiah Underhill, Legal Director of Disability Rights of West Virginia.

As described in the complaints, scores of children with disabilities enrolled in KCS have been separated unnecessarily from mainstream classrooms in their schools. Instead, the students are segregated for years in separate classrooms where they interact only with other students with disabilities, and receive an inferior education; placed on “homebound” status where they may only receive a few hours of tutoring each week; or suspended or even expelled from school for behaviors that are caused by their disabilities. The students are not receiving critical behavioral supports that can help them be successful in the general education classroom with their classmates without disabilities.

“It is heartbreaking to see KCS undermine the great potential of students with disabilities by failing to provide necessary supports and, ultimately, removing them from the classroom, causing them to miss vital instructional time and fall farther and farther behind academically and socially,” said Lewis Bossing, Senior Staff Attorney with the Bazelon Center.

Specifically, the complaints allege that KCS is: 1) violating the Individuals with Disabilities Education Act (IDEA) by failing to provide children with disabilities with the special education they need to receive a “free appropriate public education” in the least restrictive environment; and 2) violating the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act (Section 504) by failing to educate children with disabilities in the most integrated setting appropriate to their needs, and denying them equal educational opportunity.

“We are seeing KCS discipline students with disabilities with months-long homebound placements, out-of-school suspensions, and segregated placements in classrooms that resemble storage facilities rather than places of learning for ‘infractions’ as minor as touching another student with a plastic fork or refusing to get off the playground slide at the end of recess. Students are receiving behavior plans that take the form of rote checklists rather than the individualized guidance documents the IDEA requires to adequately support children to succeed in school,” said Shira Wakschlag, The Arc’s Director of Legal Advocacy & Associate General Counsel.

In 2017, the U.S. Supreme Court held unanimously in Endrew F. v. Douglas County School District RE-1 that the “IDEA demands more.” Specifically, the Court provided a new and more demanding standard for what schools must do to adequately educate students with disabilities, requiring that school districts provide “an educational program reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances” and provide students with disabilities the opportunity to meet “challenging objectives” with “appropriately ambitious” special education. For virtually all children, this means receiving instruction and services in the general education classroom, with appropriate supports, alongside students without disabilities. In addition, in 1999 in Olmstead v. L.C., the Court held that the ADA prohibits the needless isolation or segregation of people with disabilities. The ADA applies to public schools, which cannot unnecessarily segregate students with disabilities, nor deny them equal opportunities.

“We have long fought for students with disabilities throughout West Virginia to be educated in their neighborhood schools with appropriate services and supports. KCS’s systemic failures to support students with disabilities in the least restrictive, most integrated setting cannot be justified in light of recent and longstanding Supreme Court precedent,” said Lydia Milnes, an attorney with Mountain State Justice. “KCS must do much more to ensure that all its students with disabilities receive the education they need and to which they are entitled.”

“By failing to adhere to the Individuals with Disabilities Education Act and Americans with Disabilities Act, Kanawha County Schools is diminishing the ability of our clients to secure the education to which they are entitled by law,” said Michael Faris, Latham & Watkins partner. “We look forward to ensuring that the law is upheld.”

About Disability Rights of West Virginia

Disability Rights of West Virginia (DRWV) is the federally mandated protection and advocacy system for people with disabilities in West Virginia. DRWV protects and advocates for the human and legal rights of persons with disabilities. To learn more, visit https://www.drofwv.org/.

About Mountain State Justice

Mountain State Justice is a non-profit legal services firm dedicated to redressing entrenched and emerging systemic social, political, and economic imbalances of power for underserved West Virginians, through legal advocacy and community empowerment offered regardless of ability to pay. To learn more, visit https://mountainstatejustice.org/.

About The Arc

The Arc is the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities (I/DD) and their families. In partnership with its network of 650 chapters across the country, The Arc works to promote and protect the rights of people with I/DD to live, work, and learn in the community free from discrimination. To learn more, visit www.thearc.org.

About The Judge David L. Bazelon Center for Mental Health Law

The Judge David L. Bazelon Center for Mental Health Law is a national legal advocacy organization protecting and advancing the rights of people with mental disabilities. The Center promotes laws and policies that enable adults and children with mental disabilities to live independently in their own homes, schools, and communities, and to enjoy the same opportunities that everyone else does. To learn more, visit www.bazelon.org.

About Latham & Watkins LLP

Latham & Watkins LLP is global law firm with more than 2,700 lawyers located in Asia, Europe, the Middle East, and the United States. For more information, please visit its website at www.lw.com.

Washington, DC – This week, President Trump sent to Congress an amended budget proposal which included money for Special Olympics, reversing an attempt to cut the funding. However, many other cuts that could impact the lives of people with intellectual and developmental disabilities (I/DD) are still in the President’s budget request.

“Funding for the important work of Special Olympics has broad support in Congress and amongst the public. But so does funding for a host of other programs that support people with intellectual and developmental disabilities to thrive in the community.

“It’s not too late for the President to go further and reverse course on his proposal to cut Medicaid, the core program providing access to health care and home and community-based services for people with disabilities. Or his plan to impose work requirements to be eligible for the program. Or any of the other cuts proposed that could impact access to job training, maternal and child health, or caregiver support, to name a few.

“What we invest in reflects our values as a society. There’s a lot at stake for people with disabilities in the budget process in Washington, and there’s still time to make the right investments that keep up the progress we’ve made in access to services and supports across the lifespan, “said Peter Berns, CEO, The Arc.

The Arc is particularly concerned about the proposed cuts to Medicaid, which come in the same form as those included in the 2017 proposals to repeal the Affordable Care Act (ACA) and cut and cap the Medicaid program. Congress rejected this in 2017, but the Administration proposed budget includes replacing both the Medicaid expansion and ACA subsidies with a block grant, and converting the rest of Medicaid into a per capita cap which would deeply cut the program and cap the amount of funding available. The end result of these proposals being put in place would be less money for states, restrictions on eligibility, cuts to services, and growing waiting lists.

The Arc has compiled information about the Administration’s budget request as it pertains to programs that provide services and supports for people with I/DD and their families.

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.

Washington, DC – It’s budget season in Washington, DC, and there’s a lot at stake in the proposals for people with intellectual and developmental disabilities (I/DD). In the last few years, the Administration has consistently proposed cuts to programs that impact people with I/DD and their families. From home and community-based services in Medicaid, to imposing work requirements, to a planned and then scrapped attempt to slash funding for Special Olympics, this year’s budget request, if Congress were to enact legislation reflecting the President’s priorities, would be harmful to the lives of people with I/DD.

“If the Administration’s original budget request could cut $18 million from Special Olympics, which provides longstanding community benefit for thousands of people with disabilities, their families, and volunteers, then you should be asking yourself: what else is lurking in these proposals?

“Unfortunately, it’s the tip of the iceberg. The President’s budget proposes $2.7 trillion in cuts over 10 years. There are deep cuts to Medicaid on the table — the core program providing access to health care and home and community-based services for people with disabilities. The cuts come in the same form as those included in the 2017 proposals to repeal the Affordable Care Act (ACA) and cut and cap the Medicaid program. Congress rejected this in 2017, but the Administration proposed budget includes replacing both the Medicaid expansion and ACA subsidies with a block grant, and converting the rest of Medicaid into a per capita cap which would deeply cut the program and cap the amount of funding available. The end result of these proposals being put in place would be less money for states, restrictions on eligibility, cuts to services, and growing waiting lists.

“And once again, the budget proposes work requirements for Medicaid. Applying this policy would have devastating effects on health care coverage — particularly for people with complex health care needs, and likely many people with disabilities.

“What we invest in says a lot about our country and our values. We’ve come a long way in expanding disability rights and including people with disabilities in all aspects of the community, across the lifespan. We won’t go backwards and this budget request takes us in the wrong direction,” said Peter Berns, CEO, The Arc.

The Arc has compiled information about the Administration’s budget request as it pertains to programs that provide services and supports for people with I/DD and their families.

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 650 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.