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Special Olympics Saved, but What About Other Disability Program Cuts in President’s Budget?

/in /by The Arc

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 (IDD). In the last few years, the Administration has consistently proposed cuts to programs that impact people with IDD 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 IDD.

“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 IDD and their families.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (IDD), 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 IDD 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.

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The Arc Responds on Federal Court Ruling Striking Down Medicaid Work Requirements

/in /by The Arc

Washington, DC – The Arc released the following statement in response to the federal court ruling against the U.S. Department of Health and Human Services’ approval of Medicaid waiver projects in Kentucky and Arkansas that include work requirements.

“We are glad that this ruling reaffirms what Medicaid is all about – health care for those who qualify, and access to services for millions of Americans with disabilities. Cutting off Medicaid won’t help anyone work. It’s a bad policy idea that just keeps coming back, and we encourage the Administration and leaders in the states considering work requirements to abandon it once and for all.

“Imposing work requirements on Medicaid recipients isn’t going to help anyone become more self-sufficient. If anything, it will do the exact opposite. Many people with serious health conditions require access to health care services to treat those health conditions and to maintain their health and function. Furthermore, Medicaid specifically covers services, such as attendant care, that are critical to enable people with significant disabilities to have basic needs met, to get to and from work, and to do their jobs. Requiring individuals to prove each month that they meet complicated work rules, or are exempt, just makes it harder for people to qualify for these programs and access the services they need to be employed. The policy serves no purpose other than to remove people from the Medicaid roles,” said Peter Berns, CEO, The Arc.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (IDD), 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 IDD 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.

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#HandsOff Our Kids: Advocating Against Restraint and Seclusion

/in , , /by The Arc

#HandsOff is a series on The Arc Blog. Each month, we feature a story from individuals and families across The Arc’s network about how some of today’s key policy issues impact their day to day lives.

By: Erik Smith

I went to Washington last month to support my wife in sharing our family’s story about restraint and seclusion. A few weeks before, the new executive of The Arc Rhode Island Family Advocacy Network put out a call to find families who would be willing to provide testimony at a Congressional hearing on this topic. Needless to say, my wife Renee and I jumped at the opportunity. We had mixed feelings about making our family’s experience so public, but felt strongly that we needed to advocate for all families to help them avoid the painful and unnecessary practices of restraint and seclusion that our son Dillon, who has autism, had experienced repeatedly in kindergarten and the first grade.

Renee Smith sits in front of Congress testifying, as an audience sits behind her.

Renee started her testimony by describing what our daily lives used to be like. She recounted the regular instances of restraint and seclusion that Dillon experienced, the multiple calls to 911 made by the school, Dillon’s increasing dislike of school, his missed educational opportunities, and the overwhelming stress on our family. I felt proud of Renee as I watched her recount, sometimes through tears, how much harm this had caused our then 6-year-old son and our family as a whole, including our marriage and our jobs. Fortunately, Renee was able to end her testimony on a very positive note. After we moved Dillon to a different public school in the same district that uses positive behavior intervention and support, Dillon is thriving.

In preparing for the hearing, we had the chance to learn more about the history of federal legislation to limit restraint and seclusion. We learned about a law (the Children’s Health Act of 2000) that includes serious limits on these practices. The only problem is that it doesn’t include school settings.

As I listened to Renee, I was struck by the contrast between my professional and personal life regarding the limitations on restraint and seclusion. I am a nurse and I work in a long-term care facility. The Centers for Medicare & Medicaid Services (CMS) strongly regulate the use of restraints in LTC facilities, with these regulations to be enforced through state Health agency survey and certification. I have always been well aware of what I can and cannot do when our patients exhibit challenging behaviors. I have received training by my employer on patient’s rights, on what we are legally barred from doing, and on effective alternatives to restraint and seclusion. I see firsthand how this benefits our patients and staff alike. But as a parent, I see how the lack of such protections have hurt my son.

This point was made in 2009 by the former chairman of the House Education and Labor Committee, Rep. George Miller, the last time there had been a hearing on restraint and seclusion:

“Federal law restricts the use of seclusion-restraints to emergency circumstances for children in hospitals and community-based residential treatment facilities and other facilities supported by federal dollars. Yet these rules do not apply to public or private school. This means an untrained medical professional is forbidden from inappropriately restraining a patient and, if they do, there are laws specifically targeted to address such behavior. But untrained classroom staff are abusing student in schools without any accountability because of a lack of federal oversight. Our children are bearing physical and emotional burden of a system designed to fail them”

It is now almost a full decade later. Far too many children like my son continue to be restrained and secluded in school. It is past time to correct this problem.

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Trump Administration 2020 Budget Request: Old Ideas and Big Cuts

/in , , /by The Arc

Today, the Trump Administration released a budget request that if passed by Congress, would put the lives of people with disabilities at risk. The proposal includes deep cuts to Medicaid, 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. If enacted, states would receive less federal support to administer Medicaid, resulting in restricting eligibility, cuts to services, and growing waiting lists. Furthermore, it would not adjust to changes in health care, drug costs, aging of the population, or emergencies.

Not only would both a block grant or per capita cap harm people with disabilities, but the proposal also includes applying controversial and harmful work requirements across the country. Arkansas is the first state in the nation to take health care coverage away from people who don’t meet a work requirement. In the first seven months of implementation, more than 1 in 5 people subject to the policy lost their health care coverage. Applying this policy nationally, as the budget proposal would do, would have devastating effects on health care coverage — particularly for people with complex health care needs, and likely many people with disabilities.

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Walmart, Disability Employment, and an Opportunity to Lead

/in /by The Arc

By Peter Berns, CEO, The Arc

It’s no surprise that when Walmart, our nation’s largest private employer, announced plans to change the People Greeter role in its stores, a move that affects some employees with disabilities serving in that role, there was a hue and cry in the disability community and beyond. It is heartening that Walmart US President & CEO, Greg Foran, immediately stepped forward to reiterate the company’s commitment to its employees with disabilities, stating that Walmart will look at each situation individually “with the goal of offering appropriate accommodations that will enable these associates to continue in other roles with their store.” Foran further explained: “Let me be clear: If any associate in this unique situation wants to continue working at Walmart, we should make every effort to make that happen.”

As a company that prides itself on its “long-standing history of being an employer of choice for people with disabilities,” and on its 100 points score on the Disability Equality Index, these recent events provide an opportunity for Walmart to demonstrate its leadership and commitment to people with disabilities and their families. Certainly, the first order of business is to support employees with disabilities in the People Greeter role who are not able to perform the new additional responsibilities of Customer Host to transition to other jobs in the company and to actively support them in doing so. The Americans with Disabilities Act (ADA) requires no less.

At a point in time where more than 60% of people with disabilities are not employed, including 65-75% of people with intellectual and developmental disabilities, how Walmart manages the current controversy is of vital interest. Walmart’s customers are watching, as are people with disabilities and their families, disability advocacy and services organizations, academics, lawyers, the news media, and many, many other employers. The company has the opportunity to lead our nation by modeling and demonstrating best practices in employment of people with disabilities in the mainstream workforce.

Walmart can demonstrate the importance of rejecting stereotypes and misconceptions about what people with disabilities can do. True, some people with disabilities, as well as some without disabilities, may not be able to perform all of the requirements of the new Customer Host job, such as lifting 25 lbs. Yet, it is also true that many people with disabilities, including those with intellectual and developmental disabilities, will meet and exceed the minimal job requirements and perform superbly in this new role and others within Walmart stores. Walmart and other employers need be open to and accepting of the reality that an employee with a disability, with appropriate training and accommodation, can be successful in a wide variety of roles. In Walmart, after all, the former People Greeter and new Customer Host roles represent only a tiny fraction of the more than 2 million jobs nationwide.

Walmart can demonstrate that it truly is feasible for any employer to recruit, hire and retain employees with disabilities as part of a company’s overall commitment to diversity, and that the business benefits in many ways by doing so. By working collaboratively with relevant government agencies, educational institutions, and nonprofit developmental disability services, vocational rehabilitation and workforce development agencies, employers can build a robust pipeline of candidates with disabilities for all types of jobs.

Walmart, and other private sector employers that are not currently legally required to do so, could also establish voluntary systems of self-identification for job applicants and employees with disabilities, adopt disability employment goals, and annually reporting that data publicly. Today, both the Federal government, as an employer, and Federal contractors are required to have systems of self-identification and report on progress in meeting defined goals. However, these requirements don’t apply to other private sector employers, nor is the reporting made public.

Many private sector employers assume they are legally prohibited by the ADA from asking about an applicant’s disability status. Yet, as the U.S. Equal Employment Opportunity Commission has explained:

(T)he ADA does, however, provide an exception to the general rule prohibiting disability-related questions in the interview process. Under the ADA, an employer may invite applicants to voluntarily self-identify as individuals with disabilities for affirmative action purposes.1

Walmart and other private sector employers could truly be game changers in employment for people with disabilities by adopting self-identification and hiring goals, for affirmative action purposes, and then sharing and holding themselves accountable for the results.

Finally, Walmart should continue the active communication and candid dialogue it has engaged in with advocacy and social services organizations in the disability community over the past years. Walmart should share with the community the results of its efforts to place People Greeters with disabilities in other roles. It should continue and expand its efforts to work collaboratively with disability nonprofits to advance employment opportunities across the company and, as one of our country’s largest employers, across the nation.

1Recruiting, Hiring, Retaining and Promoting People with Disabilities – A Resource Guide for Employers, https://www.eeoc.gov/eeoc/interagency/upload/employing_people_with_disabilities_toolkit_february_3_2015_v4-2.pdf