On February 12, CMS rescinded guidance from 2018 that encouraged states to implement Medicaid work requirements. Additionally, CMS indicated that it would begin to unwind currently approved waivers allowing work requirements. Medicaid work requirements can cause many low-income adults to lose coverage and hurt people with disabilities.
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On February 17, President Biden nominated Chiquita Brooks-LaSure for Administrator of the Centers for Medicare and Medicaid Services (CMS). CMS oversees both Medicare and Medicaid. Medicare is the national health insurance program available to people age 65 or older, younger people with disabilities, and people with end-stage renal disease. Medicaid is a joint state-federal health insurance program for low-income individuals. Both programs serve people with disabilities. In addition to medical care, Medicaid also covers long term supports and services, such as residential support, personal assistance, respite care, supported living, assistive technology, and supported employment.
by Gabrielle Calise, Tampa Bay Times/TNS | February 12, 2021 TAMPA, Fla. — When people see Joshua Felder bust a move, they usually assume that he’s taken dance classes. Despite never being formally trained, the 23-year-old Tampa native can freestyle just like his heroes: Michael Jackson, Usher and Chris Brown. Over 96 million people watched him dance in a red suit and mask of bandages alongside the Weeknd during the Super Bowl halftime show on Sunday. Felder was one of about 200 dancers who took the field alongside the Grammy award-winning singer. It wasn’t just an honor of a lifetime to dance for viewers around the world. “The real truth is, I was born with a photographic memory, along with high functioning autism,” he said. “With my photographic memory, I can remember the steps from watching the dance videos off of YouTube.” “I want to prove to everyone that you don’t have to let your disability define you if you want to do something great in life.” For 13 years, Felder has been a participant in Best Buddies of Tampa Bay, a nonprofit that aims to spread inclusion and independence for people with intellectual and developmental disabilities. Felder is now a global ambassador for Best Buddies, traveling around the country to spread the group’s message, advocate for others and meet the occasional celebrity (including Tom Brady back in 2019). It was a Best Buddies networking event in December that brought him to the Super Bowl. Morgan Heartsfield, deputy director of development of Best Buddies of Tampa Bay, introduced Felder to a radio station manager who set up a virtual audition. “We make it a goal to try to have our participants talk to people at these networking events, and really self advocate for themselves in a way,” Heartsfield said. “And Josh really did an incredible job with facilitating this conversation with this gentleman.” Felder sent in a video of himself freestyle dancing. Within a few weeks, he heard back. He was going to the Super Bowl. Preparations took place in secret for the two weeks leading up to the game. Dancers took mandatory coronavirus tests and attended six-hour practice sessions at Steinbrenner Field and Raymond James Stadium. The performers were unpaid. But Felder said it was worth it for the once in a lifetime opportunity — especially when he learned that he would get to keep his outfit. “Lots of people are thinking to wear it for Halloween,” he said. “I would wear it sometimes for special occasions.” Due to pandemic precautions, dancers weren’t allowed to get too close to the Weeknd during practices or take photos with him. Felder remembers seeing the singer surrounded by four or five bodyguards. He also said every practice session felt like going to a free concert. Felder could barely sleep the night before the Super Bowl. He and the other dancers met at the Yuengling Center, where dozens of masked men got dressed in a cramped bathroom. Then it was time to load onto school buses and head to the stadium. Flashing police cars escorted the performers. “I felt like a celebrity right there,” Felder said. Then he was lining up on the field, mentally preparing to dash into a tunnel of lights next to the Weeknd. “The moves took over. I felt I was in the movie ‘Step Up,'” he said. “In my head, I was saying ‘let’s make history tonight.'” Even though Felder’s face was covered in white bandages, his mom, Mary, who had driven him to practice every day, recognized him by his eyes. She started to cry. Then she got up and danced, too. “He executed those moves like he was a Chris Brown backup dancer,” she said. “He knew exactly what he was doing. He hit every move. I’m thinking, ‘This dude is on his way. And I am so proud of you.'” “It’s a different world out there,” she continued. “It’s very competitive. But Joshua has shown me, ‘Look, I can compete with the best of them and still come out on top, regardless of my disability’ … his abilities have taken him to places that no one would ever expect them to go. Except, he expects to go there. He says, ‘Nothing can hold me back.'” Felder and the other dancers weren’t allowed to share their role in the Super Bowl with others until after the third quarter. As soon as he posted photos on social media, his phone blew up with notifications. He gained over 1,000 new followers on Instagram. Heartsfield was sitting on the couch watching the game when she saw his Instagram post. “We were all screaming. We were so excited for him,” she said. “I have never seen such an outpour of encouragement from all of his friends and the Best Buddies participants. And honestly, he’s probably the most deserving human being I’ve ever met in my entire life.” Felder said his life has already changed since posting the photos. He is excited to use this moment to encourage others. “I just want to be an example to everyone with a disability that you don’t have to feel isolated … Believe in yourself. Just go for it.” And of course, he’s still basking in the joy of performing. “I feel like ‘Blinding Lights’ is going to be stuck in my head forever.” by Michelle Diament | February 12, 2021 / Disability Scoop  Dozens of U.S. senators are urging President Joe Biden to make good on his campaign proposal to invest $450 billion in Medicaid home- and community-based services.
In a letter to Biden and Vice President Kamala Harris this month, 31 Democratic senators said that the administration should proceed with a plan to expand offerings for people with disabilities. Last summer, Biden unveiled a broad proposal to address the nation’s “caregiving crisis,” which included a commitment to spend $450 billion over 10 years to allow people to choose to receive care in community-based settings. Biden said he wanted to give states enough money to cover the full cost of providing home- and community-based services to each person with a disability who’s currently on a waiting list. “My plan makes a bold investment so states can clear the waiting list,” Biden said at the time. Now, Sens. Bob Casey, D-Pa., and Cory Booker, D-N.J., are leading a group of lawmakers who want to see the commitment come to fruition. They argue that investing in home- and community-based services would help drive economic growth, create good jobs in the caregiving field and meet the needs of aging Americans and people with disabilities. “Your vision includes a long overdue investment in the caregiving economy — to build a durable and robust workforce, to advance racial and gender equity and to make it possible for older adults and people with disabilities to receive long-term services and supports in their homes and communities. We strongly support this investment and stand ready to help your administration make it a reality,” the senators wrote in their letter. “At the outset of your administration, we have the opportunity to rescue a teetering caregiving system and recreate it to transform the lives of millions of workers and to serve as an economic workhorse,” the letter states. White House officials did not respond to a request for comment about the current status of the home- and community-based services proposal. by Michelle Diament | December 7, 2020   People with developmental disabilities are not being adequately prioritized in plans to distribute COVID-19 vaccines, advocates say, even though they’re more likely to die from the virus.
Centers for Disease Control and Prevention Director Robert Redfield approved a recommendation from the agency’s Advisory Committee on Immunization Practices earlier this month on how initial doses of forthcoming vaccines should be distributed. The shots are expected to be in short supply, so access will be limited. Under the recommendations, vaccines will first go to health care workers as well as residents of long-term care facilities. The committee will meet again to determine who should be part of the next phases of the rollout. While states are not required to follow the CDC guide for distributing COVID-19 vaccines, most are expected to. And that has disability advocates worried. Research shows that people with developmental disabilities who contract COVID-19 face a two to 10 times greater risk of dying as compared to others. Given that, Shannon McCracken, vice president for government relations at the American Network of Community Options and Resources, or ANCOR, said people with developmental disabilities should be “explicitly included in the top priority tier.” “We would certainly expect the message of increased mortality in people with IDD, especially those living in group settings, would resonate with public health officials at the local, state and federal level,” said McCracken whose group represents disability service providers across the nation. Under the current CDC recommendations, some people with developmental disabilities could qualify for the first phase of vaccine distribution if they live in a long-term care facility. That’s likely to include residents of institutions. “But, we are concerned because that would likely not include people with disabilities living in group homes, supported living or in their own homes receiving services,” said Nicole Jorwic, senior director of public policy at The Arc. “This is a big gap.” What’s more, Jorwic flagged the lack of priority for direct support professionals assisting people with disabilities who receive home- and community-based services. These workers are low paid and often work in multiple homes, amplifying their potential to spread the virus, she said. Now, advocates are turning their attention to states, which will have the final say in how vaccines are allocated. “Advocates at the state level need to see the federal recommendations as a starting point and push for more coverage for all people with disabilities and the workforce in any setting to have higher priority for access to the vaccine,” Jorwic indicated. McCracken said ANCOR has written to each of the nation’s governors, calling on them to classify people with intellectual and developmental disabilities living in any type of congregate setting — including institutions and group homes — as residing in a long-term care facility for the purpose of COVID-19 vaccine distribution. In addition, the group wants direct support professionals to be considered health care workers. “We would hope (long-term care facilities) would apply to (Intermediate Care Facilities for Individuals with Intellectual Disability) and HCBS programs, because social distancing is virtually impossible when supporting someone in their home,” McCracken said. “No matter what the recommendations are, the states and territories do still have the authority to prioritize critical populations as they see fit.” By Shaun Heasley New guidelines are spelling out exactly how medical care for adults with Down syndrome should be distinct from that of their typically-developing peers.
Experts from eight of the nation’s largest adult Down syndrome medical centers and other stakeholders spent four years combing research on the treatment of those with the chromosomal disorder in order to establish the first-of-its-kind evidence-based clinical guidelines. The team focused on how Down syndrome intersected with treatment of mental health, dementia, diabetes, cardiovascular disease, obesity, osteoporosis, atlantoaxial instability, thyroid disease and celiac disease. The result is a paper with 14 recommendations and four statements of good practice for clinicians treating those with Down syndrome that is published in the Journal of the American Medical Association. Estimates show that about 206,000 Americans have Down syndrome — which is known to bring higher risk of congenital cardiac issues, autoimmune diseases, Alzheimer’s disease and other health concerns — and they are living longer than ever before. Nonetheless, the panel behind the report found that “overall, the evidence base was limited.” In fact, there was no clinical research in several of the areas addressed by the guidelines, leaving the experts to make recommendations based on their experience. The strongest recommendation is for all people with Down syndrome to be screened for Alzheimer’s disease starting at age 40. Two recommendations urge earlier and more frequent diabetes screening for those with the chromosomal disorder. Meanwhile, four other recommendations — managing risk factors for cardiovascular disease and stroke prevention, screening for obesity and evaluation for secondary causes of osteoporosis — paralleled guidance that’s already in place for people without Down syndrome. “We are so pleased that the quality of our guideline rose to the occasion of being published in JAMA, and we are deeply grateful to our families and self-advocates for pushing us to work on this difficult project,” says Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation, or GLOBAL, which spearheaded the effort. “Now we can focus on collaborating with other Down syndrome and disability organizations as well as medical institutions to ensure clinicians are following our Global Guideline and measuring outcomes.” 10/23/2020 By Disabilitity Rights  Harrisburg, PA – Disability Rights Pennsylvania (DRP), a leader in disability rights legal advocacy services for forty-three (43) years, will operate an email and telephone hotline to provide voter assistance to persons with disabilities in Pennsylvania. The hotline will start today and operate through Election Day, Tuesday, November 3, 2020. Voters with disabilities who have questions about absentee or mail-in ballots, casting a ballot from a long-term care facility, asking and receiving an accommodation from their county, finding their polling place or other issues prior to Election Day can email DRP at electionday@disabilityrightspa.org or call 800-692-7443 Monday through Friday from 9:00 am to 3:00 pm. On November 3, DRP will staff the Election Day hotline from 7:00 am to 8:00 pm for any issues related to the vote for Pennsylvanians with disabilities. “The disability community is ready to cast our ballots this election,” said Peri Jude Radecic, Chief Executive Officer of Disability Rights Pennsylvania. “COVID-19 does not mean we lose our right to vote because of where we live or because counties had to consolidate polling places at the last minute. Just the opposite. It means the law permits us to exercise our right to vote in any number of ways up to and including Election Day.” Federal civil rights laws were passed to ensure people with disabilities have access to polling places, are able to register to vote, have voting materials in accessible formats, and can exercise a private and independent vote. These laws include the Americans with Disabilities Act, the Voting Rights Act of 1965, the Voting Accessibility for the Elderly and Handicapped Act of 1984, the National Voter Registration Act of 1993, and the Help America Vote Act of 2002. Disability Rights Pennsylvania notes that barriers for people with disabilities up to, and on, Election Day can include uneven implementation or interpretation of the law across all counties in the Commonwealth, inaccessible polling places, lack of accommodations, voter intimidation, and accessible machine failures. Voters who experience problems or barriers should call 800-692-7443 or email: electionday@disabilityrightspa.org. DRP has an Election 2020 page on its website. Voters can go to www.disabilityrightspa.org/election2020/. Individuals who speak languages other than English should state their language and an interpreter will be connected to the call. Callers using the Pennsylvania Relay Service can dial 711. Disability Rights Pennsylvania (DRP) is the statewide protection and advocacy agency for Pennsylvanians with disabilities. DRP protects and advocates for the rights of people with disabilities so that they may live the lives they choose, free from abuse, neglect, discrimination, and segregation. DRP’s vision is a Commonwealth where people of all abilities are equal and free. www.disabilityrightspa.org. by Shaun Heasley | October 14, 2020 from Disability scoop  People with disabilities receiving Supplemental Security Income and other Social Security benefits will soon see their payments rise.
The Social Security Administration said this week that benefits will increase 1.3 percent in 2021. The change comes as a result of an annual automatic cost-of-living adjustment, known as COLA, that’s tied to inflation. By law, Social Security benefits go up when there is an increase in the Consumer Price Index from the U.S. Department of Labor’s Bureau of Labor Statistics. The higher payments will begin Dec. 31, 2020 for more than 8 million SSI beneficiaries and in January 2021 for over 64 million people across the nation receiving Social Security. For individuals receiving SSI, the maximum federal payment will grow from $783 per month this year to $794 per month in 2021 with the automatic adjustment. Couples will see $1,191 per month next year, up from $1,175. Some states kick in additional money for SSI beneficiaries, so actual payments may be higher. Social Security officials said that beneficiaries are typically notified about their new benefit amount by mail beginning in early December, but most people can view the information in their online Social Security account. The COLA increase for 2021 is slightly less than last year’s adjustment. Benefits rose 1.6 percent in 2020 compared to the previous year. by Michelle Diament | October 12, 2020 from Disability scoop  Federal officials are firming up rules for a relatively new type of account that allows people with disabilities to save money without jeopardizing their government benefits.
The Internal Revenue Service issued final regulations this month spelling out details about how ABLE accounts should operate. The accounts, which were established by the 2014 ABLE Act, allow individuals with disabilities to accrue up to $100,000 without risking eligibility for Social Security and other government benefits. Medicaid can be retained no matter how much money is saved in the accounts. The rules released this month stem from when the accounts were originally created as well as tweaks to the law that came in 2017 tax-cut legislation. Many of the changes have already been in effect, but the IRS said the final regulations clarify specifics and address comments the agency received in response to previous proposals about how the law would be applied. Annual deposits to ABLE accounts are capped at the value of the gift tax exclusion for any given year, currently $15,000 annually. However, under the final rules, people with disabilities who are employed can deposit their earnings in ABLE accounts, above and beyond the existing contribution cap for the year. These individuals can save whatever money they earn in their ABLE account up to the value of the poverty line in the state where they live. The IRS said that workers with disabilities who have ABLE accounts can also qualify for a Saver’s Credit, which can reduce their federal tax bill. Separately, money saved in a traditional 529 college savings plan for an individual with a disability or a family member can be rolled over into an ABLE account up to the maximum annual contribution limit. The rules indicate that this option is available until Jan. 1, 2026. The regulations also offer guidance on the record-keeping and reporting requirements of ABLE programs as well as other specifics about the mechanics of the accounts. ABLE accounts are open to people with disabilities that onset prior to age 26. Money saved in the accounts can be used for education, housing, transportation, employment training and support, assistive technology, personal support services and other “qualified disability expenses.” Currently, 42 states and Washington, D.C. have active ABLE programs, many of which are open to people with disabilities nationwide, according to the ABLE National Resource Center. As of June, data from ISS Market Intelligence shows that there are nearly 71,000 ABLE accounts open nationally with $469.4 million in assets. As published in Disability Scoop -May 18, 2020 by Michelle Diament | May 18, 2020  A fresh round of stimulus checks for people with disabilities and billions for home- and community-based services are part of a $3 trillion relief bill that faces an uncertain future.
The bill known as the Heroes Act, or H.R. 6800, passed the U.S. House of Representatives Friday by a vote of 208 to 199. The measure is unlikely to be taken up in its current form by the Republican-led Senate, but it is seen as a first step in negotiating another relief package to address the fallout from the coronavirus pandemic. Significantly, advocates say, this is the only major COVID-19 response from Congress so far to consider the needs of people with disabilities who have been deeply affected by the pandemic. “The Heroes Act is the first time in the COVID-19 legislative response that the disability community is being recognized,” said Nicole Jorwic, senior director of public policy at The Arc. The legislation includes an estimated $10 to $15 billion in additional federal funding to states to pay for Medicaid home- and community-based services for a full year beginning in July. The money could be used to cover services for anyone with a disability who qualifies for the program — including those currently on waiting lists — and pay for recruitment and retention of direct support professionals, among other needs. The bill also recognizes the direct support professionals that people with disabilities rely on for day-to-day needs as essential workers so that they can access personal protective equipment, qualify for hazard pay and other extra benefits. Sarah Meek, senior director of legislative affairs for the American Network of Community Options and Resources, or ANCOR, a national trade group representing disability service providers, called the legislation a “game changer.” “There is really a recognition that this money for home- and community-based services providers is kind of a must-have in whatever package is next, so I’m optimistic,” she said. Meanwhile, the measure retroactively grants $500 cash payments to adults with disabilities who are claimed as dependents. These individuals were excluded from receiving stimulus checks in the last relief package which was approved in March. And, the legislation includes a new round of direct cash payments of $1,200 per person — up to a maximum of $6,000 per family — for many Americans earning less than $75,000 annually, with tiered amounts beyond that. People with disabilities would qualify for the automatic payments even if they are counted as a dependent or if they receive benefits like Supplemental Security Income. There is also $200 million in dedicated funding for disability housing in the bill as well as a change to allow siblings and grandparents to qualify for expanded paid leave if they need to take time off from work to care for an adult with a disability due to coronavirus-related closures. |