Woman on escalator wearing a face mask; she's holding a cell phone in one hand and her suitcase handle in the other

COVID-19 Legislation First Step in Addressing Crisis for People With Disabilities, Families

Washington, D.C. – People with intellectual and developmental disabilities (I/DD) are facing threats to their health and wellbeing due to the global COVID-19 pandemic, and the legislation passed by Congress and on its way to President Trump’s desk is a start in addressing their needs in this crisis.

The legislation includes:

  • A 6.2% increase in federal reimbursement for state Medicaid programs (FMAP), which will help state governments in their efforts to combat the pandemic;
  • Emergency requirements for all health insurers to cover testing;
  • Expanded nutrition assistance and crucial waivers for the Supplemental Nutrition Assistance Program and school meals;
  • Expanded unemployment insurance; and
  • Limited paid sick day and paid leave provisions that do not explicitly include caregivers for people with disabilities.

“This crisis is going to have a major impact on people with intellectual and developmental disabilities, their families, and caregivers, and this legislation is a good first step in meeting their needs. As this crisis evolves, more will have to be done at the federal level for all Americans, particularly those with disabilities, their families, and caregivers,” said Peter Berns, CEO, The Arc.

The Arc is working hard with legislators to ensure that the next package more directly covers the unique needs of people with disabilities, their families and the direct support workforce:

  • An additional FMAP increase that creates a grant program to support access to home and community-based services and to support the direct support professional (DSP) workforce with better pay during the crisis, and greater flexibilities in hiring and service provision.
  • A permanent reauthorization of the Money Follows the Person program, or MFP, which gives funds to states to move people with disabilities out of segregated settings and into the community. There is a real threat to unnecessary institutionalization. The flexibilities and funds from permanent MFP will support states to continue transitions to the community and away from congregate settings.
  • Economic stimulus with increased asset limits. For people with I/DD receiving Supplemental Security Income (SSI) and/or Medicaid, strict asset limits must be maintained to receive the benefits. We strongly support stimulus for low income individuals, but because of the asset limits, people with I/DD may end up with too much money in the bank, jeopardizing their SSI and/or Medicaid. Asset limits should be increased or paused to ensure that people with disabilities are able to benefit from the stimulus without jeopardizing their benefits.

“Without addressing these issues, the lives of people with disabilities and their families could be altered with no turning back. People could be placed into institutions and other congregate settings in violation of their rights and posing risk to their health. Families could be more pressed to choose between a paycheck and health and well-being. And our current DSP workforce crisis could get even worse, impacting day to day life for millions of people with disabilities. We have an opportunity in the coming days to address these big issues, and we are urging Congress to act swiftly,” said Berns.

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.

The Arc logo

Public Charge Rule Discriminates Against People with Disabilities

Washington, D.C. – The Arc is deeply concerned that the Department of Homeland Security’s discriminatory public charge rule is now in effect.

The new policy could have terrible impacts on people with intellectual and developmental disabilities (I/DD) by allowing the federal government to deny admission into the U.S. or an application for a green card based solely on a person’s disability and the use or expected use of public benefits like Medicaid. Medicaid is the only funding source that covers long-term services and supports for many people with disabilities. Home and community-based services are not covered by private insurance. The rule also dramatically expands the list of public benefits the Administration considers a strike against you, and the negative consequences start at a much lower level of assistance.

The new policy also creates fear among immigrant families already in the U.S. that rely on public services – fear of jeopardizing their immigration status by utilizing the critical benefits they are legally entitled to. This is not only unfair and counter to the purposes of these programs, but can create bad economic outcomes and harm public health. We have already seen evidence of the intimidation and harmful consequences  of the new regulations. The Kaiser Family Foundation says nearly half of community health centers report that many immigrant families declined to enroll in Medicaid in the past year, and nearly a third of centers report that some patients dropped or decided not to renew coverage – even for their children.

“People with any type of disability should have equal opportunity to enter and live legally in the U.S. The public charge rule is cruel – and amounts to clear cut discrimination. We call on Congress to immediately intervene,” said Peter Berns, CEO, The Arc. “The Arc and our allies have been fighting for a long time against exclusion and bias based on disability and we will continue to do so on the ground and in the courts.”

The Arc and a large coalition of national disability advocacy groups filed multiple amicus briefs in support of several cases to block the Administration from implementing the public charge rule, arguing that it would prevent people with disabilities from entering the country or becoming legal residents in violation of federal disability laws.

While implementation of the rule had been halted by preliminary injunctions in various courts across the country, the U.S. Supreme Court has now stayed both the nationwide and state injunctions in two decisions, the most recent issued last Friday. Though the rule is now in effect across the country, litigation is ongoing, and The Arc will continue our work to honor and protect the human and civil rights of all people with I/DD.

Close up of U.S. dollar bills

The Arc Strongly Opposes Administration’s Budget Proposal

Washington, D.C. – The Arc strongly opposes President Trump’s 2021 federal budget request announced this week that includes sweeping cuts to programs that are lifelines for people with intellectual and developmental disabilities (I/DD). The President’s budget proposal is a clear threat to people with I/DD who need and rely on programs like Medicaid and other social service safety nets for basic survival and life in the community. The budget proposal reaffirms that the Administration’s priorities are not aligned with the well-being of millions of people with I/DD in the U.S., including children and families seeking quality and fair education.

TOP THREATS TO PEOPLE WITH I/DD IN WHITE HOUSE BUDGET PROPOSAL:

  1. Cuts to Medicaid and Social Security – President Trump promised to protect these programs on the campaign trail in 2016, but once again he is proposing to cut them – this time by about $1 trillion over the next decade. Medicaid, the primary health insurance program for people with I/DD, would bear the brunt of this cut. The Administration proposes taking away health care from low-income working adults, a group that also includes many direct support workers for people with I/DD, and encourages states to select per capita caps or block grant models to fund Medicaid for fewer people, limit services and supports under the program, and reduce eligibility.
  2. Cuts to Other Important Programs – President Trump’s budget request sharply reduces, or even eliminates, several programs that improve the quality of life for people with I/DD, and help provide food and shelter:
    • Supplemental Nutrition Assistance Program (SNAP) or food stamps cut by nearly 30% over ten years.
    • Department of Housing and Urban Development cut by 15%, including zeroing out the Community Development Block Grant program and the National Housing Trust Fund, making it harder for people with I/DD to find affordable housing.
    • Developmental Disabilities Act programs are also on the President’s chopping block. His budget proposes cutting Projects of National Significance (PNS) by 92%. PNS provide grants, contracts, and agreements for projects that create opportunities for people with I/DD to participate in the community. The budget also requests cuts to State Councils on Developmental Disabilities by almost 30%. State Councils conduct advocacy and training and also promote the self-determination and inclusion of people with I/DD.
    • Community Services Block Grant and the Social Services Block Grant are eliminated in the budget proposal. Both provide grants to communities to fund a wide range of services, including resources for people with I/DD.

    Click here to see a listing of discretionary programs and their proposed percentage cuts.

  3. Discriminatory Education Programs – President Trump’s budget proposes a $5 billion school voucher program to support parents to choose any school for their children using public funding. But for students with disabilities, there is often no choice at all. Voucher programs allow schools to circumvent the Individuals with Disabilities Education Act (IDEA), forcing students with I/DD to forego the rights and protections they would have attending public school. Moreover, private schools are free to choose not to accept students with disabilities, or not to accommodate the disabilities of children they accept, which history has taught us is likely to occur.
  4. Left Out of Paid Leave– The Administration proposes a new benefit for states to provide at least six weeks of paid family leave to new mothers and fathers, including adoptive parents. It leaves out the vast majority of people who take leave in the U.S. for family caregiving and medical reasons, including people with disabilities who need leave to address their own health and people who need leave to care for a family member with a disability or illness. We need paid leave policies that are inclusive of the needs of people with disabilities and their family members.
  5. Extending Tax Cuts – The President’s budget would permanently extend the 2017 tax cuts and the challenges they have created for people with I/DD. Under current law, most individual income tax and estate tax provisions from the 2017 Tax Cuts and Jobs Act are scheduled to expire after 2025. Since the law passed, the bulk of the tax savings has gone to the wealthiest 10% of Americans and, rather than paying for themselves, the tax cuts have blown a huge hole in the revenue side of the federal budget, contributing to a projected $1 trillion deficit this fiscal year, and prompted calls to cut Medicaid, Social Security, and other programs vital to people with I/DD.

“President Trump’s ‘Budget for America’s Future’ attempts to create an especially challenging future for Americans with intellectual and developmental disabilities. As we have seen in his past budgets, proposed cuts to spending fall disproportionately on people with disabilities who depend on a number of federal programs for their health and well-being and to stay engaged in their communities. We ask that the President and leaders in Washington devise fiscal plans that help make life in America better for people with I/DD, not worse,” said Peter Berns, CEO, The Arc.

Close up of the U.S. Supreme Court, focused on the pillars, and doorway.

Supreme Court Lifts Stay on Public Charge Rule: Implementation Will Have Chilling Impact on People with Disabilities

Washington, D.C. – The Arc is deeply troubled by the decision by the U.S. Supreme Court to grant the Administration’s request for a stay of the nationwide injunction on the discriminatory public charge rule, allowing the implementation of the rule to move forward. The public charge rule will have a dire impact on people with intellectual and developmental disabilities (I/DD) by allowing the federal government to deny admission into the U.S. based on a person’s disability and the use of vital programs like Medicaid, the Supplemental Nutrition Assistance Program (SNAP), housing assistance, and other important benefits. It discourages immigrant families from utilizing critical public services out of fear of harming their immigration status.

The policy unfairly restructures immigration in a way that is detrimental to people based on their disability. For immigrants who are already in the United States legally and use public benefits, or have at one time used public benefits, or are deemed likely to someday rely on public benefits, the new rule could impact their immigration process. Many people with disabilities will, solely because of their disability, be kept out. And because of the surrounding fear and confusion the rule will cause, the harm will extend much further.

“This rule essentially tells the world, as an immigrant with disabilities, you are not welcome here. If our country perceives you to be in need of access to vital supports, you will be considered an inadmissible ‘public charge.’ Non-citizens with any type of disability should have a fair opportunity to enter and live legally in the U.S., and we urge Congress to intervene to stop this reckless violation of the civil rights of immigrants with disabilities and their families that several of the lower courts have recognized as such,” said Peter Berns, CEO, The Arc.

Research has already shown harmful consequences of the August announcement of the new regulations. The Kaiser Family Foundation found that nearly half of community health centers report that many immigrant families—fearing deportation or other negative consequences—declined to enroll in Medicaid in the past year, and nearly a third of centers say some patients dropped or decided not to renew their coverage. Kaiser also found that more than a third of health centers report that some immigrant parents were declining to enroll their children in Medicaid over the past year, while nearly 30 percent reported families dropping or not renewing coverage for their children.

The Arc and a large coalition of national disability advocacy groups have filed multiple amicus briefs in support of several cases to block the Administration from implementing the public charge rule, arguing that it would prevent people with disabilities from entering the country or becoming legal residents in violation of federal disability laws.

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.

Photo of desks in a classroom with dim, moody lighting

Class Action Complaint Filed in West Virginia Alleging Systemic Disability Discrimination in Kanawha County Schools

Charleston, WV – The Arc of West Virginia is joining parents of a child with autism in filing a class action complaint in federal court in Charleston alleging widespread failures by Kanawha County Schools (KCS) to educate children with disabilities, including autism, intellectual and developmental disabilities, mental health issues, and Attention Deficit Hyperactivity Disorder (ADHD). Specifically, the complaint, filed Friday, asserts that KCS—the public school district serving the Charleston metro area—has failed to provide behavioral supports to students with disabilities and is instead punishing them by sending them home instead of educating them. Attorneys for The Arc of West Virginia and the parents—Disability Rights of West Virginia, Mountain State Justice, The Arc, the Bazelon Center for Mental Health Law, and the global law firm Latham & Watkins LLP—allege that KCS has violated federal laws protecting students with disabilities.

“The Arc has long fought for students with intellectual and developmental disabilities to be educated in their neighborhood schools, with appropriate supports,” said Liz Ford, Executive Director of The Arc of West Virginia. “KCS’ systemic failure to provide such supports to students with disability-related behaviors has led to punishment, segregation from classmates without disabilities, and loss of valuable instruction time. This is unacceptable to The Arc and our constituents in West Virginia.”

“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.

Data from the West Virginia Department of Education shows that over 1,000 children with disabilities enrolled in KCS were removed from their classrooms during the 2018-2019 school year after their schools suspended them. This number does not include all of the additional students with disability-related behaviors whose schools asked their parents to take children out of the school before the end of the school day, or to keep them at home, without formally suspending them. It also does not include students with disabilities who were expelled from school for their behavior; those who were separated unnecessarily from mainstream classrooms and moved to segregated classrooms where they interact only with other students with disabilities and receive an inferior education; or those who were placed on “homebound” status where they may receive only a few hours of tutoring each week. These 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 fall farther and farther behind academically and socially,” said Lewis Bossing, Senior Staff Attorney with the Bazelon Center. “And the problem is only getting worse: in the 2018-2019 school year, KCS removed nearly 250 more students with disabilities from the classroom than in the prior academic year, despite overall KCS enrollment decreasing during that same period.”

Specifically, the complaint alleges 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), Section 504 of the Rehabilitation Act (Section 504), and the West Virginia Human Rights Act 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 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 supports that take the form of rote “code of conduct” checklists rather than the individualized supports that the IDEA requires to adequately support children to succeed in school,” said Lydia Milnes, an attorney with Mountain State Justice.

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.

“KCS’ systemic failures to support students with disabilities in the least restrictive, most integrated setting, and overuse of punitive disciplinary measures for behavior that is disability-related, cannot be justified in light of recent and longstanding Supreme Court precedent,” said Michael Faris, Latham & Watkins partner. “By failing to adhere to the IDEA and ADA, KCS is diminishing our clients’ ability to secure the education to which they are entitled by law. We look forward to ensuring that the law is upheld.”

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, including The Arc of West Virginia, 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 and www.thearcofwv.org

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 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.

The Arc logo

Threats to Medicaid and Social Security Resurface; The Arc Poised to Defend Critical Programs

Washington, D.C. – As reports circulate of further attacks on Medicaid and Social Security — programs that are vital to the quality of life for people with intellectual and developmental disabilities (I/DD) and their families — The Arc is preparing for battle to stop these threats in their tracks.  Federal agencies have proposed regulatory changes to cut the Medicaid and Social Security programs, and just this week President Trump made comments to CNBC highlighting plans to cut these programs “toward the end of the year.”

Medicaid and Social Security could be on the chopping block. Yet these programs are essential for the health, well-being, and community inclusion of millions of people with I/DD and their families. Medicaid is the nation’s primary health insurance program for people with disabilities, and funds vital supports to keep them in their communities. Social Security insures individuals and family members for when a worker retires, dies, or acquires a qualifying disability. Many people with disabilities depend solely on their Social Security or Supplemental Security Income (SSI) benefits and related health coverage for their basic survival. Social Security Disability Insurance (SSDI) assists workers with qualifying disabilities, their children, and spouses. All of these programs are important to people with I/DD and their families.

“Cutting Medicaid and Social Security would be devastating for people with intellectual and developmental disabilities and their families, and we will fight with everything we have to protect these critical programs. There are millions of people with disabilities, their parents, siblings, family members and friends who all agree — we can’t turn back the clock on 70 years of progress we have made in including people with I/DD as valued members of our community and supporting them to realize their full potential. People with intellectual and developmental disabilities should have the opportunity to live fair, full, and promising lives, and have access to the services, supports, and income support to do so,” 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.

A young girl with down down syndrome smiles while holding a spoon

There’s No Place Like Home: The Arc Releases A National Study on Disability Housing

Washington, D.C. – As people with intellectual and developmental disabilities (I/DD) and their families age, one question often takes center stage: Where will I or my family member live in the future? In 2019, The Arc’s Center for Future Planning partnered with CQL | The Council on Quality and Leadership to better understand the challenges that families face when making plans and decisions around future homes, and are now releasing this important report and recommendations.

Nationwide, around 75% of adults with a disability live with an aging parent or other caregiver, and most are not connected to public supports or services. As a result, aging parents and family members frequently serve as unpaid primary caregivers for their family member with I/DD. Families worry about what will happen when they are not able to provide support to their loved one and are especially concerned about where their family member will live. However, more than half of families do not have a plan for the future.

The research found that:

  • Most people with I/DD and their families said that they had very little choice in where they live because there were not many home options that would accept a person with I/DD.
  • Family members often decided where the person with I/DD would live, but people with I/DD wanted to be involved in this decision.
  • People with I/DD cherish time they have in and with the community, and want more opportunities to integrate into their communities.
  • People with I/DD want to contribute to the choices that impact their lives, such as where they live, who they live with, and how they spend their time.
  • People with I/DD want opportunities to learn new skills, participate in tasks such as cleaning, cooking, and administering their own medication, and the chance to interact with friends and romantic partners.
  • People dream of having independence and opportunities, a setting that is physically accessible, having the ability to see their friends whenever they want, being treated with respect, and having well paid and qualified support staff.

“Where you live and the characteristics of that environment impact so many aspects of someone’s day to day life. The reality is people with disabilities don’t have enough options, and they are too often bystanders when these big decisions are made about their lives. Our hope is that this report sparks a dialogue across the country that leads to progress in integrated housing options, and expands person-centered planning and supported decision-making as people with intellectual and developmental disabilities and their families prepare for the future,” said Peter Berns, CEO, The Arc.

The report includes several recommendations, including:

  • Create a centralized place for information and resources;
  • Increase funding to promote quality, community-based housing services and housing options;
  • Improve the ability for families to navigate and use the disability service and housing systems;
  • Increase wages and training for direct support staff to help people with I/DD in their homes;
  • Ensure services and supports are person-centered and directed by what a person wants; and
  • Empower people with I/DD to exercise their rights and make decisions.

The Arc and CQL conducted a two-part mixed method study. The first part of this study included a national online survey of people with I/DD and family members of people with I/DD; the survey included both quantitative and qualitative items. The second part of this study included in-person nominal group technique (NGT) sessions throughout Illinois. NGT is a participatory action research method which includes structured brainstorming similar to a focus group, except it is more inclusive, accessible, collaborative, and reduces the power dynamics often involved in research. In total, 726 people participated in this study (377 people with I/DD (51.93%), 349 family members of people with I/DD (48.07%)), representing 45 states and the District of Columbia.

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.

MLK Day logo that says "MLK Day of Service - Corporation for National and Community Service"

The Arc Joins #MLKDay of Service to End Food Insecurity

On this Martin Luther King, Jr. Day of Service, The Arc will once again commemorate the life of Dr. King and his dream for equality and civil rights for all people. The iconic civil rights leader’s passionate and persistent fight for equality and against discrimination paved the way for the disability community to advance and persevere in its ongoing fight for equality, rights, and inclusion.

In honor of his work, The Arc is making it a day on, not a day off! This year, several chapters of The Arc and partner organizations will work together to address food insecurity and promote inclusive volunteering to bring together people with and without disabilities to serve their communities.

“People with disabilities are often perceived as the ones always in need of help, but in reality, they also have the desire and ability to help others and to play an active role in strengthening their own communities,” said Peter Berns, CEO of The Arc. “In the true spirit of Dr. King, the Day of Service shines a light on what all people – including those with intellectual and developmental disabilities – can do to love, uplift, and support their neighbors.”

Interested in participating on a volunteer project with one of our 2020 subgrantees? See if there’s a volunteer event near you in the list below! You can also search the national database for all opportunities to get involved.

A graphic depicting Martin Luther King, Jr. that reads "25th MLK Day of Service - make it a day on, not a day off. January 20, 2020. Volunteer at MLKDay.gov.

2020 MLK Day of Service Partner Organizations

If you’re looking for more information on volunteering and people with disabilities, check out our free resources.

A woman in a motorized chair plays with a small dog on a grassy field in front of houses

Community Living Program Extension Passes: 2020 Year to Advocate for Deinstitutionalization

Washington, D.C. – This week, instead of finalizing a deal that would provide certainty and stability to a program that moves people with intellectual and developmental disabilities (I/DD) out of institutions and into the community of their choice, Congress reauthorized the program for only five months.

The Money Follows the Person program, or MFP, provides funds to states to continue their work on deinstitutionalization, by paying for programs not normally covered by Medicaid, such as housing and employment services. MFP has moved more than 91,000 people with disabilities and aging adults out of institutional settings and back into the community, where they belong. The program has also shown better quality of life outcomes and Medicaid savings averaging 20% per beneficiary per month.

Just a few weeks ago, a bipartisan deal was on the table to permanently extend the program. But in the final negotiations, the length of the support of the program was changed to five months.

“While this is a disappointing turn of events, we have our marching orders for 2020 – advocate, advocate, advocate for a permanent commitment to Money Follows the Person. There is widespread, bipartisan support for this successful program. If we are going to achieve the goal of bringing people out of the dark shadows of institutions to live meaningful, independent lives in the communities of their choice among their family members and peers, with appropriate supports and services, then Congress has to step up. We are ready to help make that happen in 2020,” 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.

Navigating Special Education: A Comprehensive Online Training for Families, Educators, and Advocates

The services and supports and the quality of education available to students with disabilities has continuously improved since the Individuals with Disabilities Education Act (IDEA) first required schools to educate all students with disabilities back in 1975. However, the process of identifying which students should receive special education services and what services they should receive can be complicated, for both schools and families. The Arc@School’s new, online Advocacy Curriculum provides parents, educators, and non-attorney advocates the basic information they need to navigate the special education system.

What Is Special Education Advocacy and Why Do We Need It?

The IDEA requires schools to provide students with disabilities a free and appropriate public education (FAPE) in the least restrictive environment (LRE) through an individualized education program (IEP).

FAPE means students with disabilities must receive all of the specialized supports and services that they need to benefit from their education, at no cost to them or their family. LRE means students with disabilities must learn in the same classes and same schools that they would attend if they did not have a disability, as much as possible. Finally, an IEP is a document created annually that describes what the student already knows, what the student will learn in one year, and what services and supports the school will provide to help the student reach his or her educational goals.

Young students sitting at wooden desk in classroom; teacher helping boy in wheelchair

The process for creating the IEP is meant to be one of collaboration between a student’s parents, the student once he or she reaches age 16, teachers, service providers, and other school staff who know the student best. However, this collaborative process can break down due to disagreement between parents and school staff regarding the student’s plan. The IDEA builds in a system of accountability where students and their parents have certain rights and can take certain actions when they do not feel that the school is meeting the student’s needs appropriately. Students and parents often struggle to advocate on their own for appropriate educational services, so some seek to educate themselves so that they can advocate for services on their own, and some seek help from a special education advocate to obtain the services they feel the student needs.

What The Arc is Doing to Help

Since its founding in 1950, The Arc has advocated for students with intellectual and developmental disabilities (I/DD) to have access to educational supports and services. A lawsuit brought by a chapter of The Arc was a critical factor in the passage of the IDEA. Many chapters of The Arc continue to provide lay special education advocacy for students with I/DD and their families. In 2016, The Arc created The Arc@School to support chapters of The Arc, families, and educators in ensuring students with I/DD receive the services and supports they need at school.

To help families, educators, and advocates for all students with disabilities better understand how the collaborative process should work, and how they can better work together to meet student’s needs, The Arc@School launched an online curriculum in 2019 that provides basic information on navigating the special education system at an affordable cost for users. The Arc@School’s Advocacy Curriculum includes eight online, self-paced modules on the legal foundation of the special education system, early intervention services, individualized education programs (IEPs), procedural safeguards, Section 504, educational records, and more. Users who complete all 8 modules will receive a certificate of completion.

A successful IEP is the foundation for students with disabilities to successfully transition to postsecondary education, employment, and independent living. The Arc@School’s Advocacy Curriculum can help families, educators, and advocates support students on their path to success!