Delaware County Advocacy & Resource Organization


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Individuals with intellectual disabilities find lifelines with professionals during pandemic

3/29/2021

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by Peg DeGrassa pdegrassa@21st-centurymedia.com @ PeggyDe5 pn Twitter
MEDIA — The COVID-19 pandemic has been rough on mostly everyone, but the population’s most vulnerable individuals have perhaps suffered the most. Since last March, individuals with intellectual and developmental disabilities, whose lives often thrive on the stability of routine, have had their worlds overturned and their lives have become anything but routine.

Individuals with intellectual and developmental disabilities who use licensed and unlicensed residential services number almost 15,000, according to state statistics. Just like their counterpart facilities serving elderly and physically disabled individuals, residential facilities serving those with intellectual and developmental disabilities also locked down last March. Many residents with intellectual and developmental disabilities, in an effort to stop the spread of COVID, were unable to have visits from family or any other outside guests and were prohibited from going home for visits or out in the community. Heroic, dedicated staff put their lives on the line, risking their health and the health of their families, by continuing in their positions at the residences.

Over 5,644 individuals in Pennsylvania with intellectual and developmental disabilities use Participant Directed Services, meaning their funding does not go through a service provider. Rather, these individuals live with their family, in their own homes, or in another private living arrangement in the community. This number is growing steadily. Through waiver funding, individuals with Special Needs, who live in the community are supported by Direct Support Professionals, who can be their friends, neighbors, certain family members, or professionals in the field. During the pandemic, families are calling their professionals their heroes, because they risk their lives to continue coming into private homes to offer support. With those they support no longer able to access day programs, jobs, workshops and activities in the community, the professionals creatively revised the ways that they offered support.

"We as advocates for individuals with intellectual and developmental disabilities and their families have long been well aware of the vital role that professionals play in supporting those individuals and families,” stated Eileen MacDonald, executive director of Delaware County Advocacy and Resource Organization in Swarthmore. “Their dedicated service and support to our most vulnerable population has long been overlooked and undervalued. Their presence, persistence, care and dedication have the most significant impact on the lives of the individuals they serve and their families at every level.  The COVID-19 pandemic has presented all of us with significant challenges, but none more than to the intellectual and developmental disabilities population.”

“I honestly don’t know what we would do without our Direct Support Professionals — people don’t realize how important they are in the lives of our sons and daughters,” expressed Donna Wetherill, who lives with her husband Rus and son Matt in Secane. “I can’t say enough good things about the DSPs and the wonderful things that they do!”

Matt’s professional, Shawn Korp, of Philadelphia, has been with Values Into Action in Media for five years. Before the pandemic, Korp supported three male individuals. In an effort to limit contact during the pandemic, he is currently supporting two of the three. He has worked one-on-one with Matt for about four years.

Pre-pandemic, Matt, who has Down syndrome, severe autism, sensory integration disorder, seizures, orthopedic issues and uses a speech device, was very active in the local community. He spent one to two days a week, doing shredding at the Office of Intellectual Disabilities in Upper Darby. Neither Rus or Donna drive. Rus is the assistant IT director for Delta Community Supports and Donna is the director of Pennhurst monitoring for DCARO. Recently disabled with physical limitations themselves, they both currently work from home and depended on Shawn to take Matt to his job, as well as accompany Matt on his volunteer mission at Meals on Wheels through the Media Senior Center, and other community outings. Before they became housebound, Shawn and Matt would go to the YMCA, the zoo, the theatre, concerts, day trips and parks.

“They would be out and about the entire day,” Donna said. “Usually they wouldn’t come home until 5 or 6 o’clock!”

Last March all of that came to an abrupt halt. Donna says her son doesn’t understand all the changes. He becomes easily frustrated. He’s behind on all his medical appointments. Without his normal routine, severe sleep issues have returned and he’s up half of the night.

“They used to go out all the time,” she says of her son and his one-to-one professional. “Now Matt’s only outing is an occasional car ride. I shudder to think what Matt's life-- all of our lives-- would be like during this pandemic without his Direct Support Professionals.”

Shawn Korp has stepped up to the plate to revise the ways Matt can continue to live his best life during the pandemic.

“Matt was so used to being out in the community — this has truly been a learning process for us both,” Korp explained. “He has learned a new order and is becoming much more independent in his home.”

Instead of dropping off his laundry once a week to get washed and folded and then picked up, Matt and his professional now do the laundry, which teaches him a life skill. Korp has devised a daily routine to eat breakfast, do dishes, enjoy music time do other tasks around the house and take car rides to places that they used to enjoy, just to talk about the memories. He said he’s also teaching Matt how to use an iPod to choose his own music selections.

“We haven’t attempted going anywhere in the community yet, because Matt has trouble with personal space,” Korp explained. “I enjoy the one-on- one work because I feel like I am helping Matt live a life that is ‘normal. Together, we are trying to make the best out of the situation.’”

Both 29 years of age, Matt and Shawn look forward to both being fully vaccinated so they can maybe get out some this summer and do some of the things that they used to enjoy together.

Tina Feoli of Deptford, New Jersey has been supporting Erin Perry, 28, of Clifton Heights for as long as she can remember. She has known her, and her parents, John and Kathy Perry, for over 20 years, she said. In addition to her role as a Direct Support Professional with Erin, Feoli is a Student Assistance Counselor for the Delsea School District in Franklinville, N.J., working with at-risk students.
Pre-pandemic, Erin had a busy and productive life. In addition to spending time with friends and family out in the community, she had a job at the local AMC movie theatre. Once March 10 came, everything changed.

Mom Kathy is the Associate Director of In Home and Community Supports at Values Into Action. She began to work remotely at home. Dad John is an ER tech at Children’s Hospital of Philadelphia. Feeling they were all at high risk, the family made a decision to not allow any professionals come and go in their home, even though Erin, who has Down Syndrome, was approved through a waiver to have 40 hours a week in support.

“Individuals with Down Syndrome are ten times more likely to die from COVID,” Kathy explained. “The risk was too high for us to take.”

Although Erin previously had eight professionals, she is now down to three and all are doing remote support for six to ten hours per week, using creativity and ingenuity to keep Erin from regressing or feeling socially isolated.

“I am so impressed with Erin’s staff,” Kathy said. “They were ready to pivot on a dime and make the remote support work. At first, it was really difficult. For the first eight months, Erin would ask us if she could go back to work. She was on an emotional roller coaster with her whole routine switched up. But now, we realize that even during these challenging times, she is still learning and growing, thanks to her DSPs.”

Feoli said that Erin has increased her patience and her technology skills, with much of the remote support taking place on the Zoom platform. Erin and her staff have done work-outs to Disney Zumba, talked while both coloring in adult coloring books, took virtual tours of places like zoos, Disney World, Hershey Park, and the Caribbean Islands, and even baked together. Feoli and Erin each had their own box of brownies in hand, while Feoli read over Zoom what ingredients to get, what steps to take, when to get a potholder, and more.
“We feel very fortunate to be afforded this opportunity to still stay connected with Erin on a regular basis,” Feoli said of their remote support. “Through our relationship, I have watched her grow and become more independent. I’ve watched the joy and light come back to her eyes, as she learns and lives her best life, even during these trying times. When I see her smile, I know she will be alright.”

The funds for Person Directed Services go through one of two financial management services organizations, and the person or their surrogate has control over their services, their staff support, including wages, within an approved range, and essentially all aspects of their supports, and their lives.  People using Person Directed Services also can use a Supports Broker to assist them with employer related duties, compliance tasks and to build a strong and sustaining system of supports.

Marian Frattarola-Saulino, MSW, is co-founder and executive director of Values Into Action, a provider of direct services and supports brokerage in Pennsylvania and New Jersey. The nonprofit has a mission of customizing its services to help individuals with intellectual and developmental disabilities create and build meaningful relationships and connections in their community and live their best life.

“Our experience in supporting people and their families through this pandemic has given us opportunities to broaden our definition of support, to adapt to changing needs and to embed our person-directed, family centered approach in organizational policies and practices that have helped all our stakeholders mitigate and, in most cases, prevent exposure to COVID-19,” Frattarola-Saulino said. “What's been most important from our experience and perspective during this time, is the degree to which people have control over their lives -- where they live, who lives with them, who is coming into their home, what type of support is being provided and how that support is provided. All of this personal control has a direct and positive impact on a person's safety and well-being.  This has always been the case (with Person Driven Services) and the pandemic has certainly highlighted this issue.”

 Frattarola-Saulino said families who have been able to be paid to provide the support their disabled family member needs, have ensured that vulnerable members have not been exposed to people unwittingly and unknowingly carrying the virus to them from outside their home. 
“When you compare this to people living with others not related to them in group homes and facilities who have little to no control over who comes in and out, it’s no wonder they have unfortunately fared far worse overall,” the VIA director explained.

During the COVID pandemic, Direct Support Professionals working in private homes also had a better safety rate than those working in group facilities, as they were only exposed to the individual whom they are supporting and their family.
In late February 2020, Values Into Action created an Emergency Preparation Team comprised of all organizational stakeholders. They created worst case scenarios and planned from those perspectives, because they wanted to protect the professionals, as well as those individuals whom they serve. Frattarola-Saulino said that she knows the vital importance of DSPs and their value to those with intellectual and developmental disabilities and their families. She has seen it first hand, over and over again.

“Before the government offered PPP, we adapted our policies to ensure every Direct Support Professional was paid for time off, regardless of their employment status,” Frattarola-Saulino stated. “If they experienced symptoms or if they or their family members were exposed, we did not want fear of loss of income or employment to impact their judgement about coming to work when there was risk of infecting others.”

Once the PPP was received, VIA immediately raised every Direct Support worker's hourly wage and revised support schedules in partnership with people and their families to ensure minimal contact with other colleagues when providing in- person support. VIA also began offering remote and virtual supervision and support when appropriate.  For those always needing support, VIA arranged for live-in scheduling and paid the worker a premium to provide support in this way.  

“We cannot say enough about our colleagues providing direct support, “Frattarola-Saulino said. “We (VIA) could not have continued to provide the services and supports people and their families needed during this unprecedented time without them.  We are committed to not reducing their wages once we are through this, and to that end we hope to gain support of our fellow service providers, our communities and of our legislative leaders to truly acknowledge the absolute necessity of those providing direct services in partnership with people with disabilities choosing to live in their own homes or with their families.   We know now that person directed, family centered services must be a matter of choice, not chance.”

Jessica Clark, 38, of Glen Mills, has Down syndrome and is legally blind. She lives with her mother Joann Clark, who has been widowed since 2009. She received a consolidated waiver after her high school years and receives about 40-45 hours of support services each week.

After attending Elwyn Preschool, Jessica went on to get a Montessori education at the Walden School in Media. After participating in the DCIU Options Program, Jessica worked at Justice in Brinton Lake before it shut down and then was fortunate to transition into her role as a “Girl Friday” at her alma mater. Since 2003, she has been dedicated to helping out in the classrooms and performing other tasks at Walden School. For 25 years, she has also been an active altar server and helpful parishioner at St. John Chrysostom Catholic Church in Wallingford.

Since last March, Jessica has been on hiatus from the Walden School job and other activities that she previously enjoyed. With the help of her professionals, she is still in the process of revising her life until things open up again. Mom Joann said her only child could no longer go out into the community to risk exposure to the coronavirus since her conditions make her vulnerable.

To curtail exposure, mom Joann has limited her professionals to two individuals who continue to support Jessica—Cathy Hinkle and Marelys Rodriguez.

Rodriguez, of Upper Darby, has been a Direct Support Professional with Values Into Action for five years. She has supported Jessica since 2015.
“Jessica has become like a sister to me,” she said.

Since the pandemic has made Jessica homebound, the professional has refashioned her time with her to learn new skills for enrichment and education.
She has taught Jessica new household chores and new organizational skills, how to do laundry, make her bed, and help mom out more. The pair has developed a routine that often includes time with adult coloring books, watching movies, learning computer skills, cooking and baking, and arts and crafts.

She now livestreams Sunday Mass, the Stations of the Cross, and other church services, and takes virtual tours of interesting places on the computer. Jessica is a big Disney fan, Marelys said, so she’s thankful for the debut of Disney Plus so they can watch 90’s Disney shows together. Jessica is also learning to order the household groceries for delivery or to pick up curbside.

“We do a lot of brainstorming,” Rodriguez shared. “I am constantly thinking how I can fill our time together with things that are meaningful for Jess, since she is not seeing her friends or being active out in the community. I want her to have something to look forward to. We talk a lot, about feelings and other stuff. I want to be an ear for her, a different face — I want to help her accomplish things that will bring her joy.”

Frattarola-Saulino said, despite the tragedy and loss, the challenges of these unprecedented times, created an opportunity to shift the system and show the need to honor and support people with intellectual and developmental disabilities and their families as the experts of their own lives.

“We can either embrace this shift or we can keep the status quo, knowing now that outdated models of support do not keep anyone safe,” Frattarola-Saulino remarked. “In fact, it has exacerbated this public health situation.  As a community, as a system dedicated in word to ensuring an Everyday Life for everyone, we have the chance to live it in deed as well.”
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“DSPs have ‘heroed’ through this pandemic, continuing to provide the service and support so needed by our IDD individuals,” MacDonald said. “It is our hope that this pandemic will finally educate people to the essential role DSPs play as well as the need to provide DSPs with a living wage.  We at DCARO applaud the selfless efforts of all Direct Support Professionals who continue to directly support individuals with intellectual and developmental disabilities throughout the COVID-19 pandemic."
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CMS Rescinds Guidance Allowing Medicaid Work Requirements

2/23/2021

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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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Biden Nominates Chiquita Brooks-LaSure for CMS Administrator

2/23/2021

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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.
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How A Dancer On The Spectrum Landed A Spot In The Super Bowl Halftime Show

2/12/2021

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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.”
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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.”
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Senators Call On Biden To Uphold Promise To Expand Community-Based Services

2/12/2021

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by Michelle Diament | February 12, 2021 / Disability Scoop
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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.
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COVID-19 Vaccine Should Go To Those With Developmental Disabilities First, Advocates Say

12/8/2020

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by Michelle Diament | December 7, 2020
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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.
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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.”
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In First, Doctors Get Guidelines For Treating Adults With Down Syndrome

11/3/2020

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By Shaun Heasley 

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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.”
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Disability Rights Pennsylvania Announces Voting Rights Email and Hotline for Voters with Disabilities 800-692-7443 or email: electionday@disabilityrightspa.org

10/23/2020

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10/23/2020
​By Disabilitity Rights
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​​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.
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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.
Election 2020 Resources
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SSI, Social Security Benefits Will Increase In 2021

10/19/2020

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​by Shaun Heasley | October 14, 2020  from Disability scoop
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​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.
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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.
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IRS Issues Final Rules For ABLE Accounts

10/13/2020

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by Michelle Diament | October 12, 2020    from Disability scoop
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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.
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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.
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