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The Arc on House Health Care Bill: “Medicaid Will Be Decimated”

/in , , /by The Arc

Washington, DC – The Arc released the following statement on the draft legislation that repeals the Affordable Care Act (ACA) and pays for it by decimating Medicaid, a program critical to the lives of people with intellectual and developmental disabilities:

“This legislation ends Medicaid as we know it. If it is enacted, Medicaid will no longer be a state and federal partnership – the federal government will cap what it provides, leaving the states to pick up the pieces. It will have a dire impact on the lives of people with intellectual and developmental disabilities who rely on Medicaid and the Affordable Care Act for their health care, community supports, and as a way to live independently in their communities.

“Thanks to the Medicaid expansion under the Affordable Care Act, millions of people, including people with disabilities, their family members, and their support professionals, have gained access to health coverage. Lives have been saved because people have had access to affordable, comprehensive health coverage. The tax credits and changes to health savings accounts proposed in this bill are not adequate to meet needs of people with intellectual and developmental disabilities or those with chronic health conditions. And we have no idea how much this approach will cost, or how many people will lose coverage as Congress is rushing this bill through before the budget experts can do the math on the price tag in dollars and impact on lives.

“The bottom line is that under this legislation, Medicaid will be decimated. People will lose vital benefits and services that support their basic human right to a life in the community. It will turn back the clock on the progress we have made as a society over the last 65 years. It’s morally reprehensible, and our nation cannot let this happen,” said Peter Berns, CEO of 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 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.

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The Arc Applauds U.S. Supreme Court Decision Allowing Independent Disability Discrimination Claims Against School Districts

/in , /by The Arc

By: Shira Wakschlag, Director, Legal Advocacy & Associate General Counsel

The Arc applauds this decision which removes important barriers for students with disabilities seeking redress under the ADA and Section 504. The Arc has long advocated for the rights of students and others with intellectual and developmental disabilities to live their lives free from discrimination and with necessary accommodations, to which they are entitled under federal law. This decision is an important step in ensuring robust enforcement and protection of those rights.

In a major win for students with disabilities and their families, the U.S. Supreme Court issued a unanimous decision authored by Justice Elena Kagan on Wednesday in Fry v. Napoleon Community Schools that allows students to bring lawsuits directly under the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 (Section 504) without requesting an administrative hearing under the Individuals with Disabilities Education Act (IDEA) when their claim is not related to the adequacy of their education. The IDEA requires schools to provide specialized instruction and related services to eligible students to help them make progress on their educational goals. In contrast, the ADA and Section 504 prohibit discrimination of people with disabilities of all ages, both in and out of schools, in any public facility or federally funded program. This decision eliminates certain roadblocks that have prevented students from seeking relief directly in federal court when their claims involve disability discrimination under the ADA or Section 504, rather than their educational services and supports under the IDEA. Attorneys from The Arc attended oral arguments in this case before the U.S. Supreme Court last October.

Ehlena Fry, the plaintiff in the case, has cerebral palsy and uses a service dog, Wonder, to assist her with daily activities, such as “retrieving dropped items, helping her balance when she uses her walker, opening and closing doors, turning on and off lights, helping her take off her coat, [and] helping her transfer to and from the toilet.” When her parents asked the school to allow Ehlena to use Wonder in her kindergarten classroom, the school refused. Ehlena’s individualized education program (IEP) under the IDEA included use of a human aide, and the school argued that the aide met all of Ehlena’s “physical and academic needs,” rendering Wonder unnecessary. As a result, Ehlena’s parents removed her from the school and filed a disability discrimination complaint under the ADA and Section 504 with the U.S. Department of Education’s Office for Civil Rights (OCR).

OCR investigated and concluded that the school had discriminated against Ehlena by denying her use of her service dog, just as it would be discrimination to require a student who uses a wheelchair or a blind student to be carried or led around by a teacher or aide rather than permitting the student to use a guide dog or a cane. Following OCR’s investigation and findings, the school agreed to allow Ehlena to attend school with Wonder, but the family chose to enroll her in another school for fear of retaliation. The family also filed a lawsuit in federal court against the school system alleging disability discrimination and seeking monetary damages under the ADA and Section 504 for the school’s previous refusal to reasonably accommodate Ehlena’s use of her service animal. The lawsuit was dismissed by both the federal district court and the Sixth Circuit Court of Appeals who concluded that any claims that were educational in nature had to undergo the administrative hearing process in the IDEA before they could be filed in federal court.

In finding in favor of Ehlena and her family, the U.S. Supreme Court stated that students do not have to exhaust the administrative proceedings required in the IDEA when the essence of their claim is not about the IDEA’s free and appropriate public education (FAPE) requirement, as was the case here. The Court’s opinion offered some general guidance on how to identify whether the IDEA’s FAPE requirement is the essence of a lawsuit against a school, distinguishing between a student who uses a wheelchair suing a school for not having an accessible ramp (which is not about FAPE) and a student with a learning disability suing the school for not providing math tutoring (which is about FAPE). A concurring opinion from Justice Samuel Alito, joined by Justice Clarence Thomas, criticized this part of the Court’s guidance as creating confusion for the lower courts. In addition, because the Frys were not claiming that Ehlena was denied a FAPE under the IDEA, the Court explicitly chose not to address the question of whether students must exhaust the IDEA’s administrative hearing process when the complaint does allege a denial of FAPE but the specific remedy being requested is not available under the IDEA, such as monetary damages.

Though the decision in Fry leaves some questions unanswered, it does eliminate certain roadblocks that have prevented students from seeking relief directly in federal court when their claims involve disability discrimination under the ADA or Section 504, rather than their educational services and supports under the IDEA.

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Chapters of The Arc Are Getting Media Coverage on the ACA and Medicaid

/in /by The Arc

Members of Congress are constantly seeking ways to know what’s going on back home and what their constituents care about. One way their offices do this is by monitoring their local and state newspapers every day. When constituents get published or quoted, members of Congress and their staff pay attention.

Several chapters of The Arc have gotten such well-deserved attention in the last several weeks. They have clearly and persuasively articulated the concerns of thousands of people with intellectual and developmental disabilities (I/DD) in their communities regarding the Affordable Care Act (ACA) and the Medicaid program.

David Thielen, CEO of The Arc of East Central Iowa, had a guest column printed in the Iowa Gazette at the end of December regarding the effects of block granting Medicaid. He made the point that there are only three main levers when costs are shifted to cash-strapped states under a block grant – reducing eligibility, limiting services and supports, and cutting reimbursement to providers. Three weeks later, he followed up with another guest column published in the Cedar Rapids Gazette explaining the tangible benefits of the ACA to individuals with I/DD. These include improvements to long-term supports and services, tax credits to improve affordability of health insurance, banning discrimination based on pre-existing condition, ending annual and lifetime caps, and requiring plans to provide a comprehensive set of benefits including rehabilitative and habilitative services and devices.

Robert Hage, President of The Arc of New Jersey wrote a letter to the editor on January 15 that appeared in five local news outlets. He discussed the increased access to private insurance and Medicaid expansion provided by the ACA, and noted that “repeal may make a good soundbite – but what Americans with I/DD need now is more than talk – they need action that keeps the promise of the ACA.”

Three other chapters were interviewed in news stories in January, including a television interview. Nancy Murray of The Arc of Greater Pittsburg at ACHIEVA was quoted in the Pittsburgh Post-Gazette regarding Medicaid block grants, “Right now, [this] is the No. 1 concern among disability advocates. We are scared to death.” In an article in the Wisconsin State Journal, Lisa Pugh of The Arc Wisconsin reinforced the few, stark options that states would face under a block grant, “Any form of a reduced funding structure from the federal government means likely one of three things: cuts to programs, cuts to benefits, or elimination of certain populations of people in Medicaid.”

Heather Denman, Executive Director of The Arc of Harrison and Rockingham, appeared in a segment on Virginia’s WHSV 3 to highlighted the ACA’s provisions on ending annual and lifetime caps on health insurance coverage, eliminating pre-existing condition discrimination, and providing funding for services outside of institutions. “The biggest piece is just taking something away and not having anything that is there to replace it and worrying about people who have preexisting conditions,” she stated.

The Arc is proud of its network of over 660 chapters across the country who work hard everyday advocating for people with I/DD and their families. We are pleased to see more and more in the press as a result of this as informed and passionate spokespersons.

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Celebrating 24 Years of the Family and Medical Leave Act

/in /by The Arc

This week, The Arc celebrates the 24th anniversary of the Family and Medical Leave Act (FMLA). This landmark law ensures that millions of workers don’t have to choose between their job and their own health or the health of a family member.

Here are three things that people with intellectual and developmental disabilities and their families need to know about the FMLA:

  1. The FMLA offers much-needed leave for workers (including workers with disabilities) and family caregivers. Qualified workers at companies with 50 or more employees can take up to 12 weeks of unpaid family or medical leave each year. The FMLA specifies allowable uses, notably for a worker to address their own serious health condition, to care for a new baby, and to care for a spouse, child, or parent with a serious health condition.
  2. The FMLA protects against job loss. When a worker returns from FMLA leave, the employer must restore the worker to his or her previous job, or an equivalent job with the same pay and benefits.
  3. The FMLA ensures continued access to health insurance. If a worker has employer-sponsored group health insurance, the employer must continue to cover the worker under the same terms and conditions as if the worker had not taken FMLA leave. If the worker’s health insurance covers a family member, that coverage must also continue.

Family and medical leave has always enjoyed widespread public support – but the FMLA was a hard-won victory. Congress considered bills every year for 8 years before finally approving the FMLA on a bipartisan basis. Getting the FMLA across the finish line was testimony to the power of coalition. Organizations representing women, families, workers, seniors, people of faith, businesses, health professionals, and people with disabilities worked closely together to secure the FMLA.

The voices and views of people with disabilities and their families have always been a core part of that advocacy. In the 1980s and 1990s, groups like The Arc were deeply engaged in coalitions working to enact the FMLA, and people with disabilities and family caregivers shared many compelling stories in Congressional hearings and in the media. More recently, thanks to disability community advocacy, in 2015 the Department of Labor clarified that workers can use FMLA leave to care for a sibling with a serious health condition.

The FMLA was an important first step. But more work remains.

Today, about 40 percent of American workers aren’t covered under the FMLA, and many can’t afford to take unpaid leave. Only 14% of workers have paid family leave to care for a new child or seriously ill loved one. And gaps still exist in how you can use FMLA leave, such as being able to use leave to attend a child’s IEP meeting.

That’s why, as The Arc’s Robin Shaffert recently highlighted, we are joining the call for a robust federal paid family and medical leave program that adheres to a core set of principles. All employees must be able to access paid leave of meaningful length and for the full range of needs established in the FMLA. Families come in many shapes and sizes, so “family” must be inclusively defined. Paid leave must be affordable and cost-effective for workers, employers, and the government. And we must ensure that people who take paid leave do not experience adverse employment consequences as a result.

As President Clinton stated when he signed the FMLA into law on February 5, 1993, “Family and medical leave is a matter of pure common sense and a matter of common decency.” We couldn’t agree more. On the FMLA’s 24th anniversary, we celebrate its success and renew our commitment to a robust and inclusive federal paid family and medical leave program.

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The Arc Applauds Federal Government’s Finalizing of Hiring Rule Focusing on People With Disabilities

/in , /by The Arc

Washington, DC – Earlier this week, The U.S. Equal Employment Opportunity Commission (EEOC) published regulations to finalize how federal agencies will comply with their legal obligation to be proactive in hiring individuals with disabilities. This regulation, commonly known as the 501 regulation, aims to make the federal government serve as “model employers” for individuals with disabilities. The regulation sets goals of 12 percent representation for individuals with disabilities and 2 percent for individuals with “targeted” disabilities, which include people with intellectual and developmental disabilities (I/DD).

Current research indicates that 85% of people with I/DD are unemployed. The Arc is working with the public and private sectors to change this reality and offer opportunities for people with I/DD to obtain meaningful career opportunities alongside people without disabilities on an unprecedented scale through our employment program, TheArc@Work.

“This action is a big step towards including more people with intellectual and developmental disabilities in the workforce, contributing alongside their peers without disabilities. The unemployment rate for people with intellectual and developmental disabilities is incredibly high, and it’s going to take dramatic steps like this rule to open the eyes of employers to the skills of people with disabilities and benefits of hiring them,” said Peter Berns, CEO, The Arc.

This EEOC action clarifies the obligations that the Rehabilitation Act of 1973 imposes on federal agencies, as employers, that are over and above the obligation not to discriminate on the basis of disability. When the draft rule was released in 2014, The Arc submitted comments to the EEOC that drew attention to the fact that in the previous few years, there had been some modest increases in the numbers of people with disabilities employed by the federal government. But The Arc was deeply concerned that many people with the most significant disabilities, including jobseekers with intellectual and developmental disabilities, were being left behind.

Data obtained by The Arc from the Office of Personnel Management revealed that in fiscal year 2012, the federal government employed only 813 non-seasonal, full time permanent employees with intellectual disability (ID), representing 0.044% of all federal employees. Only 28 people, or 3/100ths of one-percent of total new hires, were people with ID. That same year, the federal government employed only 118 part-time employees with ID. Only 17 people with ID were hired as part-time employees, about 9/100ths of one-percent of new hires.

“Throughout this process of finalizing the rule, The Arc has worked to keep the pressure on to make sure that people with I/DD aren’t left behind. We are pleased that this regulation is at its end stage, and as we move forward, we will be looking for and helping to facilitate progress in the hiring rate for people with I/DD,” said Berns.

The regulation does not apply to the private sector or to state or local governments. This final rule will be applicable on March 6, 2017. The applicability date for this final rule will be January 3, 2018.

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.

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Two Small Words Bring Meaningful Change for Special Needs Trusts

/in /by The Arc

By Marty Ford

The enactment of the 21st Century Cures Act (P.L. 114-255) on December 13 brought with it a very short but meaningful provision for people with disabilities. By adding only two words (”the individual”) to an existing statute, section 5007, the Fairness in Medicaid Supplemental Needs Trusts, will allow individuals who have disabilities to set up their own self-settled trusts for purposes of the Medicaid program. This technical fix was long needed to address a technical legislative drafting error in a 1993 federal law which was later interpreted to have Congressional intent.

Self-settled special needs trusts are an important planning tool for many individuals with disabilities who receive certain government benefits, such as Medicaid and Supplemental Security Income (SSI), and who receive funds from other sources, such as an inheritance or personal injury lawsuit. Without such a trust, these individuals would lose their government benefits that are essential for basic living and medical expenses. Prior to enactment of this new law, individuals with disabilities who didn’t have a living parent or grandparent couldn’t create their own self-settled special needs trust without going to court. This new law moves us forward in addressing the needs of many people with disabilities who can and should be able to handle their financial affairs without the need for court intervention or other obstacles that stand in the way.

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Deadline Looming to File Discrimination Claims

/in /by The Arc

The Arc would like to alert you to an important deadline if you have experienced discrimination based on your disability by the Greyhound bus company. Below is the information from the U.S. Department of Justice.

“November 10, 2016, is the deadline for individuals with disabilities who experienced discrimination while they traveled or attempted travel on Greyhound Lines, Inc., to submit claims for compensation from Greyhound. This claims process was established in settlement of a lawsuit that the Department of Justice filed against Greyhound earlier this year.

Pursuant to that settlement, Greyhound has hired a claims administrator to distribute an uncapped amount of compensation to people who:

  • have a disability;
  • traveled or attempted to travel on Greyhound between February 8, 2013, and February 8, 2016;
  • experienced a disability-related incident during the travel or attempted travel (for example, lack of accessible transportation or transportation-related services, Greyhound’s failure to make disability-related accommodations, etc.); and
  • submit a Claim Form by mail, email, or online to the Claims Administrator by no later than November 10, 2016.

Help is available from the Claims Administrator for those who are unable to complete the Claim Form due to a disability. Instructions regarding the claims process are available at the Claims Administrator’s website, www.DOJvGreyhoundSettlement.com. The Claims Administrator can also be reached by email at GRYsettlement@classactionadmin.com, toll-free at 1-844-502-5953 or 1-800-659-2656 (TTY), or by mail at U.S. v. Greyhound Claims Administrator, c/o Class Action Administration LLC, PO Box 6878, Broomfield, CO 80021.

For more information or for a copy of the consent decree, please visit our ADA website at www.ada.gov. Those interested in finding out more about the ADA may also call the Justice Department’s toll-free ADA Information Line at 800-514-0301 or 800-514-0383 (TDD).”

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What Is Disability? Department of Justice Releases Revised Regulations to Implement the Requirements of the ADA Amendments Act of 2008

/in /by The Arc

On August 10, 2016, the Department of Justice (DOJ) released the much anticipated final rule revising the Department’s Americans with Disabilities Act (ADA) Title II (public services) and Title III (public accommodation) regulations to implement the requirements of the ADA Amendments Act of 20009 (ADAAA). The final rule will take effect on October 11, 2016.

The new DOJ regulations provide significant clarification for who is covered under the ADA. The final rule clarifies that those with disabilities from cancer, attention deficit hyperactivity disorder, learning disabilities, and other conditions should be protected under the ADA.

In addition to clarifying the term disability, the final rule provides a non-exhaustive list in defining major life activities, and adds rules of construction to be applied when determining whether an impairment substantially limits a major life activity. DOJ states that the goal is to ensure the ADA is construed broadly in favor of expansive coverage, thereby meeting the original Congressional intent.

Although the ADAA is already in effect and applies to all entities covered under Title II and Title III (employment) of the ADA, DOJ’s changes to the regulations will assist in the interpretation and application of the ADAAA. The ADAAA’s provisions regarding the definition of disability will also apply to Title I of the ADA.

The final rule includes clear language that individuals with intellectual disabilities are covered under the ADA and the ADAAA. The analysis in the rule makes it clear the intent of Congress was to protect individuals with I/DD even where a mitigating measure, medication, etc., might lessen the impact of an individual’s disability.

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A National Call to Action on Toxic Environmental Chemicals

/in , , /by The Arc

Last year a group of nearly 50 leading scientists, health professionals and providers, and children’s health and disabilities advocates (including The Arc) came together out of concern over the growing link between toxic environmental chemicals and neurodevelopmental disabilities. Last week, we issued a consensus statement under the banner of Project TENDR: Targeting Environmental Neuro-Developmental Risks.

Our statement is a national call to action that seeks to significantly reduce exposures to chemicals and pollutants that are contributing to autism spectrum disorder, attention deficits, hyperactivity, intellectual disability, and other conditions. Prime examples of these are chemicals in everyday use to make plastic more flexible, upholstery less flammable, and crops more plentiful.

The prevalence of neurodevelopmental disabilities has been increasing significantly according to the CDC, while the programs and services that are needed to support them remain under attack. It’s time to change how we do business in prevention. We need to shift the burden of proof to show that chemicals are safe before we allow them to affect a baby’s developing brain.

Read the New York Times and CNN coverage of the consensus statement. For more information about Project TENDR, see https://projecttendr.com/

While we must work together to prevent developmental disabilities resulting from toxic exposures, we must work simultaneously to protect the services and supports for those who live with these disabilities now. Want to get involved in advocating for services and supports for people with disabilities? Sign up for The Arc’s Disability Advocacy Network.

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Everyone’s Right to Reach Unimaginable Heights

/in , /by The Arc

By: Nicole Jorwic, Director of Rights Policy, The Arc of the United States, and oldest of four.

There is a saying that goes, “the two greatest gifts that a parent can give a child are roots and wings.” These are gifts that I have been lucky enough to receive, along with my siblings, including my brother Chris who has autism. My brother Chris is nonverbal, and it wasn’t until he was in his late teens that we appreciated his true intellectual capacity. Before that he was “locked away,” his words, “by autism.” My parents, even before we knew Chris’ true level of intelligence, presumed his competence and pushed his teachers, therapists and service providers to think beyond his disability. It is with that perspective that I read the recent New York Times Magazine Article “Should Parents of Children With Severe Disabilities Be Allowed to Stop Their Growth?”

The article highlights the incidents of parents of children with severe physical and cognitive disabilities unnaturally stunting the growth of their children, in order to make it easier to care for them at home throughout their lifetime. This decision, I can imagine, is not come to without a great deal of deliberation and trepidation. However, it should not be the parent’s choice to make. The Arc’s Health Position Statement is clear:

“Treatments for persons with I/DD that are proposed primarily for the convenience of the caregiver (such as medical procedures that interfere with typical growth and development) must be denied.”

The decision making process, outlined in this piece, is based on the needs and desires of the caregivers, and completely removes the voice and rights of that child with a disability.

The parents are also making the decision based on information that they have received from doctors about their child’s developmental age and potential. This is science that is imperfect at best. As noted in the article, there is “a significant body of research shows that the intellects of people with severe motor impairments can be grossly underestimated.”

With this incomplete information decisions are made, despite the reality that many individuals, including my brother’s, intellectual capacities are not known or can evolve over their lifetimes, especially when they find a means to communicate. This is proven true with the child who is featured in the story. Ricky has “shown signs of purposeful movement, an important developmental milestone, by using a head-motion-activated assistive-communication device to stop and start videos at his school for the visually impaired.” This development is, I am sure, treasured by the family, but it also shows that Ricky’s right to self determination was eliminated by the decision to stunt his growth. As is clearly stated in The Arc’s Rights Position Statement regarding self determination:

“People with intellectual and/or developmental disabilities have the same right to self-determina­tion as all people. They must have opportunities and experiences that enable them to exert con­trol in their lives and to advocate on their own behalf.”

The ability to assert control in their lives was violated by the decision to stunt their growth, and the rights of these children were breached. There is a dignity of risk for all of us, including individuals with intellectual and/or developmental disabilities. That includes the right to grow, make mistakes, and to thrive. Perhaps what these families should be advocating for is not the ability to stop their child’s growth, but, what should be advocated for is better technology to help the children communicate their wants and needs, as well as technology and better supports that will make it easier for their children, as they grow into adults, to stay at home. That growth will come from roots, planted in the belief that every person has a right to reach their full physical stature and their full potential. All of us grow in ways we couldn’t have imagined as children, and all people with disabilities must be afforded the right to achieve those “unimaginable” heights.