​By Leah Mikulich
Published: 5:10 am EDT May 16, 2023Updated: 9:34 pm EDT May 15, 2023

Powered by a mighty nutrition professor who came up with a delicious way to help young adults with intellectual/developmental disabilities (IDD) in the community gain cooking independence and self-confidence, the Ram Chef Program provides culinary instruction, nutrition education and food safety skills to eager young adults with IDD during the academic year in a new state-of-the art culinary kitchen at West Chester University. Ram Chefs are paired with WCU nutrition coaches for personal instruction. Professor of Nutrition Jeanie Subach, a registered dietitian and board-certified sports specialist dietician, came up with the idea in 2019 and began the program with just three students.

Today, the popular Ram Chef Program boasts 18 young adults with IDD from the community who work with 26 volunteers every Wednesday evening during the academic year in the university’s nutrition lab located in The Sciences & Engineer Center and The Commons (SECC).

During WCU Employee Appreciation on Tuesday, May 16, seven of the Ram Chefs will be making and serving “Philly-themed mocktails” for all university employees at 11:45 AM – 2 PM in the bustling new foods laboratory located in the SECC at 155 University Avenue in West Chester (2nd Floor, Room #201). The Ram Chef stars will serve-up yummy creations during a festive afternoon designed to celebrate WCU employees and the spirit of Philadelphia.

“The program’s mission is to train young adults with IDD in the culinary arena with a goal of cooking independence and employment. The mission is being satisfied with seven Ram Chefs securing jobs in the food industry right on campus — with Aramark Dining Services,” said Subach.    

Throughout the academic year, the Ram Chefs prepare snacks for the WCU Athletic Fueling Station. The Ram Chefs will also prepare sport fuel and meals for WCU Campabilities 2023. In addition to cooking, the participants maintain an eight-bed Ram Chef garden from May through November.

The Ram Chef Program has received more than $40,000 in grant funding from the Justamere Foundation and the Pennsylvania Developmental Disabilities Council. These grants fund the food and equipment portion of the program. The Ram Chef Program is free to participants, is supported with university resources and is run by WCU faculty and student volunteers.

“Three of our Ram Chefs have been coming to campus since they were six years-old,” Subach added.  “Our newest Ram Chef, TJ, is the biggest WCU sports fan! He goes to all the men’s and women’s basketball games and knows the stats of every player. Our Ram Chefs are a big part of WCU. We see that teaching adults with IDD to perform activities to promote independence, with the least amount of assistance, improves their self-determination and independence.”​

Learn more at West Chester University.

​By Ken Knickerbocker
​Delco.Today
Published: 5:26 am EDT July 28, 2022

A new Department of Transportation program could provide a boost to the Southeastern Pennsylvania Transportation Authority’s (SEPTA) plans to make its stations A.D.A. accessible, writes Stephanie Lai for The New York Times.


The program that launched earlier this week allows cities to apply for federal funding to improve the accessibility of their public transit stations for disabled people. The program puts aside $1.75 billion to update stations that currently do not comply with the Americans With Disabilities Act.


According to Kelly Greene, a spokeswoman for SEPTA, renovating older statins in the Philadelphia area will cost about $4 billion. The transit authority has already created a schedule to start updating its stations to be A.D.A. accessible. Some of the already scheduled projects could receive funding from this new program.
​

Jinny Kim, the director of the Disability Rights Program at Legal Aid, emphasized the importance of the new program, as it would help prioritize accessibility even when transit systems have had to deal with pandemic-related lower rider fares.


“People with disabilities can continue to ride transit because they do depend on it,” she said. “When public transit systems are inaccessible, they just can’t access society.”


Read more about SEPTA and the Department of Transportation’s program that allows cities to apply for federal funding to make public transit stations more accessible to disabled people in The New York Times.

Just because people have disabilities doesn’t mean they don’t dream. For many people, dreams of becoming doctors, lawyers, teachers, and other professionals are easily within reach. And for many people with disabilities, this type of dream has come true. Modern legislation, educational practice, and even technologies have made it easy for people with disabilities to reach high levels of achievement.

However, most “success stories” of this type involve educational goals or career goals that involve working in traditional office settings. One area that has been persistently difficult to navigate is professional sports. When you consider that many rules in competitive sports were made in order to ensure fair competition, this is unsurprising. After all, some things that people with disabilities use to play sports could represent an unfair advantage against people who don’t use them. For this reason, the sports world has developed alternative leagues and competitions, such as the Paralympics, for this subset of athletes.

One of the exceptions to this rule is automotive racing. With racing, the main concern is learning to control a fast-moving vehicle safely. Recent technological developments, such as car modifications that let drivers control the vehicle with their hands or eyes, have made racing possible for those with mobility impairments. And, because the user’s physical strength is irrelevant in every other way, everyone can compete fairly in the same competitions.

In this article, we’ll look at some motorsports racers who have succeeded despite difficulties moving their arms, legs, or both. These drivers represent a variety of medical conditions, ages, and preferred types of vehicles. Then, we’ll briefly look at some opportunities for veterans and people with disabilities to learn this exciting sport.

The Drivers

One of the great things about most motorsports is their low emphasis on physical condition. Some of these drivers developed their disability as youth or adults, and at least one was born with it. No matter what “caused” their disability, though, their love of cars and the independence that goes with it often “drives” them.

Thierry Genetier

Porsche driver and Frenchman Thierry Genetier have always loved cars and racing. As a youth, he was always looking at cars and hoping to drive fast ones someday. Then, he started racing rally cars at age 18, switching to motorbikes a few years later. Unfortunately, his motorbike racing career ended in 2002, when Genetier had a serious motorbike accident that paralyzed him from the waist down.
​
Not to be deterred from returning to the racetrack, Genetier worked hard and relearned to drive using hand controls. Over time, he regained his driver’s license and then earned a racing license from the FIA that lets him race modified cars. Now, he is famous in the sportscar circuit driving a Porsche 911-T3.
​

Charlie Ray Howell

Sometimes kids have racing in their blood from the very beginning, and Charlie was no exception: he started racing to go-karts at age seven. However, Charlie had a secret: Osteopenia Imperfecta (OI), also known as “brittle bone disease.” Because of this medical condition, Charlie’s bones are brittle and break easily. This medical condition, combined with an accident, left him unable to use his legs as an adult.

Unwilling to give up his love of racing, Charlie did what other drivers on this list did: modified his car, relearned how to drive, and resumed racing. Now, he not only wins races but helps people with disabilities and medical issues learn how to race as well.
​
Michael Johnson
​
For Michael Johnson, the need to race started as an adolescent with motorbike racing, the most powerful vehicle he could drive under age 17. However, this racing episode didn’t last long. During a race, Michael was involved in an accident that injured his back and caused him to become paralyzed from the chest down.
But that didn’t stop Michael. He soon learned to drive a go-kart with adaptive equipment that let him control the vehicle entirely with his hands. Then, he progressed to driving a road car and, later, a Formula/Indy car. At the time, he was the only Indy car driver with paralysis. Nowadays, Mike competes in the Continental Tire circuit driving a Hyundai sportscar.
​
Perhaps most inspiring about Mike, though, is the way he talks about his disability. He doesn’t like being known as the disabled racecar driver, so much as the guy who overcame long odds to become a champion. In addition, his website talks about his experimental treatment to try and walk again. So far, he has recovered a lot of movement, but there’s still a long way to go. His overall message: don’t get discouraged.

​

​More than anything, Robert Kubica’s story is one of comeback. He began a distinguished career in the year 2000, after winning many titles as a teenage go-kart racer. After becoming the first Polish F1 racer to win a title, Robert had a serious accident in 2011 during a race. His car crashed into the barriers, which cut into the cockpit. His arm was nearly severed, and Robert broke several bones. Doctors thought he’d never race again.
​
Not to be deterred, Robert undertook extensive rehabilitation efforts. Starting in 2013, he returned to racing in rally cars rather than F1, because he wasn’t ready for F1 yet. He also worked as a tester for new racecar models. Finally, in 2017, Robert returned to F1 racing. He is working his way up to the top of the charts.

Caleb is a child go-kart racer from the UK. He’s also profoundly deaf. Because he uses cochlear implants, which don’t fit under crash helmets, he races in complete silence. Rather than using the sound of his kart to help drive, he relies on the feel of the road underneath it. As a result of this hard work, Caleb has won several championships. He isn’t one to let sensory deficits stop him. Rather, he follows his dreams.


Nathalie McGloin
​
Nathalie is on her way to becoming a legend. As a teenager, Nathalie was a passenger in a car when she was in an accident. The accident caused a severe spinal cord injury, and three of her limbs are paralyzed. At this point in her life, she didn’t even have a driver’s license, but she was determined to learn how to drive. Then, in college, she bought a sportscar and fell in love with these powerful vehicles. Soon, she was racing in modified sportscars. Now, she is proud to race not only as a woman but as a woman with a disability.

According to Nathalie, motorsports are some of the most disability-friendly events. If someone can learn how to race with modified cars, there’s no fear that they have an advantage over anyone else. In addition, though racecar drivers might be seen in their wheelchairs, they don’t look any different when driving down the track.
​
As part of racing’s overall commitment to supporting disabled drivers, the FIA has a Disability and Accessibility Commission. This committee not only ensures that people with disabilities can compete safely, but also seeks to improve conditions at the track for them. Nathalie is the chair of this commission, and she works to raise the profile of disabled racers worldwide. At the same time, she continues to race in a Lamborghini sports car.

​Team Brit

In closing, let’s look at Team Brit, the first team made up of all disabled drivers. They operate in the GT and kart racing spaces. At Team Brit, the idea is to give racers with disabilities a sponsorship, and they hope to eventually make it to Le Mans. In addition, they help would-be racers modify their cars so they can enjoy motorsports. In fact, they have a plug and play modification system that lets drivers return their car to standard specifications, and then share it with another driver.

Accessible NASCAR Racing for People with Disabilities and Veterans

Here in the United States, many people with disabilities want to experience driving a racecar, even if it’s just once. Likewise, veterans return from deployment with serious injuries, or even with psychological issues that make it hard to cope with life. For many of them, getting to drive can be a major boost to them psychologically. And for a few, it might even become a job.
There are several organizations that help people have this experience, such as Accessible Racing. Each of these companies put someone in the driver’s seat of a modified racecar, along with an instructor. This allows them to channel their inner Charlie Howell or Nathalie McGloin.
If you already have a racecar and have experienced a life-altering disability, there are companies that will alter your car so you can race again. Not only can you get racing mods, but you can also get adaptive modifications for everyday driving.

Wrapping Up
​
No matter what kind of disability someone has, there’s no reason to say “I can’t” when it comes to motorsports. As these drivers, and even teams, demonstrate, with the right modifications and enough determination, almost anyone can race. In addition, racing is one of the most disability-friendly sports out there, with disabled drivers in all car types. If you think you’d enjoy racing, there’s no reason not to try it.

​By PEG DEGRASSA | pdegrassa@delconewsnetwork.com | The Delaware County Daily Times

LANSDOWNE — The Delaware County Advocacy & Resource Organization’s thrift store at 19 S. Lansdowne Ave. has literally rose from the ashes to reopen and rebrand itself as The Thrift Shop on the Avenue.
​
Owned by the Delaware County Advocacy & Resource Organization in Swarthmore, and staffed by the New Options Program at the Delaware County Intermediate Unit in Morton, the nonprofit Thrift Shop on the Avenue has been offering customers an array of household goods, clothing, shoes, bric-a-brac, books, electronics, small accent furniture, jewelry, small appliances, and more, all at rock-bottom bargain prices, for over 50 years. The Thrift Shop is not only a community asset, giving local residents a convenient and low-cost shopping option, but it is also a work training site for Delaware County students transitioning out of high school and into their community’s work force.

The Thrift Shop is managed by the DCIU Options/ Transition Services, a person-centered program providing opportunities in the community for local students to develop the necessary skills, habits, and attitudes for employment, travel and daily living skills.

Proceeds from the thrift store benefit the Delaware County Advocacy & Resource Organization, formerly the ARC of Delaware County, a non-profit organization that has been advocating for people with intellectual and developmental disabilities since 1956.

Historically, the Delaware County Advocacy & Resource Organization has played a vital leadership role in securing civil rights and community inclusion for all persons with intellectual and related disabilities, including the right to education, workplace accommodation and community living. Today, the Delaware County Advocacy & Resource Organization is the premier advocacy organization for children and adults with developmental disabilities and their families.

The thrift store, which has always benefitted the lives of those with intellectual disabilities, originally opened in the early 1970s, across the street from its current location, in another section of Lansdowne Avenue. The store was a new venture for, what at the time, was the Delaware County Association for Retarded Citizens. The organization eventually became known as DelArc, and then The Arc of Delaware County, eventually morphing into the Delaware County Advocacy & Resource Organization, which it remains today.

When the store originally opened, it was staffed and run by mothers of ARC members.  Each year, the mothers held a big fashion show fundraising event that supported the annual operations of the Thrift Store.

In the early 1990s, the Thrift Store moved to its current location of 19 S. Lansdowne Ave. Shortly after the relocation, The Arc partnered with the Delaware County Intermediate Unit to make the store a job training site. Since that day, students, learning skills for long-term employment under the guidance of the DCIU New Options/Transition to Work professional trainers, make up the working staff of the store.

Currently training nine students, ages 18-21, DCIU New Options Site Trainers Joan Steven and Brian Jennings oversee about 2-4 students training at the shop each day. There is a site trainer on premises at all time.

Steven, a Drexel Hill resident, has been training students at the shop for 12 years.
“I love working in this store and I especially like working with the students,” Steven said. “My role is very rewarding because I get to see them picking up the job skills and then working independently with the customers.”

Three of the nine student trainees draw a paycheck for their work, thanks to a grant secured through DCARO. Students learn to perform the tasks that an employee would normally do like vacuuming, sweeping, sorting donations, arranging clothing on racks and items on shelves, cleaning and dusting counters and windows, changing window displays, pricing, working the cash register, taking out trash, helping people bring in donations from their vehicles, doing seasonal changeovers in the shop, removing empty hangers from racks and more.

“We are servicing, supporting, and training students all over Delaware County to enrich their lives and provide a gateway of opportunities for the next chapter of their lives,” explained Lisa Muss, DCIU Options Program Site Coordinator. “In addition to living by the motto of ‘Reduce, Recycle, Repeat’ and providing this important resource to the community, the thrift shop actually helps students’ career future by teaching skill sets for gainful employment.”

Muss, a resident of Media, oversees job training for DCIU students, as well as seven job trainers, at multiple sites throughout Delaware County, including the Thrift Shop on the Avenue, Boeing, Millers Ale House, Giant, Morton Post Office, Villanova, YMCA, Acme, Goodwill in Upper Darby and Swarthmore and many more.

The store, which is leased from Deborah Whitehead, was destroyed in a fire on Dec. 7, 2020, but reopened, after extensive renovations, in November 2021. DCARO updated the store with new lighting, new walls and ceilings, paint, carpets, and a donation prepping station with sinks in the back of the store. Although the shop is shining new with recent renovations, the Thrift Shop on the Avenue kept its same signature, recognizable storefront on Lansdowne Avenue. DCARO pays the rent and insurance for the shop, while the DCIU pays electric and phone bills.

The staff at the shop is grateful for donations and accepts men, women, and children’s clothing, shoes and accessories, as well as housewares, toys, books and CDs, small furniture, jewelry, seasonal décor, small working appliances and other electronics, books and other items. In addition to store inventory, the shop is also always grateful for donations of hangers, racks, mannequins, tools, bins, and shelving. Store staff said donations were scarce during the pandemic, so they hope that will change now that the community has mostly returned to normal.

Donations can be brought to the store during regular business hours. So far, word has spread through word of mouth that the store is open and accepting donations. Donations can be brought to the front or back door, but should not be left outside or they will be ruined in inclement weather.

The Thrift Shop on the Avenue attracts shoppers who believe in its mission, as well as many neighborhood shoppers who come on foot, or by train or bus since the shop conveniently sits on well-traveled Lansdowne Avenue. “The regulars” come by the store weekly, always seeking new inventory. The store has an off-street municipal parking lot in the back, as well as metered parking on its front and side street.

“I stop by the store at least twice a month,” explained customer Camille Canada of West Philadelphia, as she browsed the merchandise in the shop last week. She said she has been a customer there for at least a dozen years.

“They have clean clothes in good condition here, nice books and games, and I bought a radio here once that I really like and still use,” Canada commented as she perused the book selections and chose one about the president to purchase.

“I especially like their prices here,” she added with a knowing smile, as she stood at the counter, with an arm full of items, ready to pay.

Throughout the year, the Thrift Shop on the Avenue holds sales, including a stuff-a-bag sale at the end of each season. The store accepts only cash. Staff is happy to answer phone inquiries when customers call to ask if the shop has certain items before they come into the store.

“We welcome the public to stop by and see what we have to offer, as well as meet the young men and women being trained here at the shop” stated DCARO Executive Director Eileen MacDonald. “DCARO is committed to continuing to provide these job training opportunities, administered by the DCIU, for the benefit of our young individuals living with intellectual disabilities in Delaware County. We are proud to partner with DCIU on this very important endeavor.”

Thrift Shop on The Avenue is open 9 a.m. to 3 p.m. Monday to Thursday and 9 a.m. to 2 p.m. Friday. Beginning May 7, the shop will be open Saturday, 9 a.m. to 2 p.m. For more information, follow “Thrift Shop on the Avenue” on Facebook, Twitter, and Instagram, call 267-874-8208 or e-mail lansdownethriftshop@dciu.org or Lisa Muss at lmuss@dciu.org or visit https://www.dciu.org/Page/728. For more information on the Delaware County Advocacy & Resource Center, visit https://www.delcoadvocacy.org.

by Michelle Diament | June 28, 2021 Disability Scoop

For the first time in years, a federal panel tasked with guiding the nation’s priorities on autism is set to meet.

The Interagency Autism Coordinating Committee will hold a virtual meeting July 21 and 22. The panel is comprised of government officials and members of the autism community and is charged with advising the secretary of health and human services and coordinating federal activities related to the developmental disability. The group last met in July 2019.

Since that time, all of the committee’s members saw their terms expire. Congress approved the continuation of the committee as part of the Autism CARES Act, which took effect in October 2019, and nominations for new members were accepted between Nov. 19, 2019 and Feb. 21, 2020, but no new appointments were made.

Susan Daniels, director of the National Institute of Mental Health’s Office of Autism Research Coordination, which manages the IACC, told Disability Scoop that the COVID-19 pandemic played a role in the delays and things were further held up when the White House changed hands in January.
Now, officials say that new committee members will be announced in the coming weeks.

Alison Singer, who is president of the Autism Science Foundation served three terms on the IACC off and on between 2007 and 2019, said that she’s “thrilled” to see the committee resuming.

“The IACC plays a critical role in the autism community and its dormancy for over a year has had real repercussions,” Singer said. “Individuals with autism and their families have been disproportionately affected by the pandemic in terms of lost school time, canceled services, social isolation and shuttered university research centers. It’s more urgent than ever for the IACC to resume its function coordinating federal and public efforts to support autism research and services, and to inform the HHS secretary about the effect of COVID-19 on our population so that appropriate new policies can be enacted.”​

The new iteration of the IACC will be larger than before. Under the most recent version of the Autism CARES Act, the number of self advocates, parents and autism group representatives on the panel will grow from two to three each. The law also calls for the IACC to add members from the U.S. Departments of Labor, Justice, Veterans Affairs and Housing and Urban Development.

President Joe Biden’s effort to get people with disabilities off waiting lists by infusing billions into Medicaid home and community-based services looks stalled for the moment, but the plan may soon get new life.

The proposal to inject $400 billion into the community-based services system came as part of Biden’s American Jobs Plan, a wide-ranging infrastructure proposal introduced in March.

At the time, the White House said “these investments will help hundreds of thousands of Americans finally obtain the long-term services and support they need, while creating new jobs and offering caregiving workers a long-overdue raise, stronger benefits, and an opportunity to organize or join a union and collectively bargain.”

But right from the start, Republicans opposed the home and community-based services plan arguing that it had no place in an infrastructure bill. And, the proposal is missing from a bipartisan infrastructure deal that Biden endorsed this week.

“It is frustrating that an issue that is nonpartisan — because constituents need HCBS in every district, in every state — is getting left out due to semantics,” said Nicole Jorwic, senior director of public policy for The Arc, who noted that the community-based services component continues to poll better than any other part of the American Jobs Plan.
​
Despite the setback, however, Jorwic and other advocates say they expect that the extra funds for home and community-based services will be included in a budget reconciliation bill that could be passed in the coming months by Democrats alone.

Just this week, Democrats in Congress unveiled legislation to make Biden’s plan a reality. Known as the “Better Care Better Jobs Act,” the bill would offer states a 10 percentage point increase in the matching funds they receive from the federal government for home and community-based services if they meet certain requirements. In addition, it includes incentives for states to strengthen the direct care workforce.

The measure, backers point out, is already co-sponsored by 40 of the nation’s 100 senators.

The legislation cannot come soon enough, said Sarah Meek, senior director of legislative affairs at the American Network of Community Options and Resources, or ANCOR, which represents disability service providers across the nation. She said that workforce shortages before the pandemic meant that providers were often unable to open new lines of service, but those issues have been exacerbated and now some agencies don’t have the staff to continue serving existing clients with disabilities.​

“We’re at a breaking point and something like this has to happen,” Meek said.

​by Shaun Heasley | May 24, 2021  Disability Scoop

​Apple is set to roll out a host of updates to make its devices even more user-friendly for people with disabilities.

The technology giant said that software updates coming later this year will include changes “designed for people with mobility, vision, hearing and cognitive disabilities.”
​
Apple’s iPad will start supporting third-party eye-tracking hardware, the company said, allowing individuals to control the device with their eyes. And, a new background sounds option is intended to help neurodiverse individuals stay focused and calm by masking unwanted external noises with the continuous audio of a stream, ocean, rain or other balanced, bright or dark noises.

The switch control system that currently offers users alternate ways to control functions on their iPhone or iPad devices will be expanded to allow for control with sounds like a click, pop or “ee,” Apple said, giving more options to those who are nonverbal or who have limited mobility.

Meanwhile, improvements are coming to Apple’s VoiceOver screen reader to allow users to explore objects within images. Apple Watch will become more sensitive to muscle movement and tendon activity to give people with limb differences control over the device without using touch. And, the company is launching a new service called SignTime to allow customers to communicate with Apple support and retail representatives using American Sign Language.

“At Apple, we’ve long felt that the world’s best technology should respond to everyone’s needs, and our teams work relentlessly to build accessibility into everything we make,” said Sarah Herrlinger, Apple’s senior director of global accessibility policy and initiatives. “With these new features, we’re pushing the boundaries of innovation with next-generation technologies that bring the fun and function of Apple technology to even more people — and we can’t wait to share them with our users.”

Access to behavior therapists is woefully lacking in many places, with a new study finding that more than half of the nation’s counties don’t have a single one.

Even in communities with board-certified behavior analysts, or BCBAs, the number of providers available to serve each child with autism varies greatly, researchers found.

The findings come from a study published recently in the journal Autism that looked at all 3,108 counties in the 48 contiguous states and Washington, D.C.

Researchers cross-referenced information from the Behavior Analyst Certification Board’s registry of providers with data from the U.S. Census and the Department of Education’s Civil Rights Data Collection in an effort to estimate both the number of BCBAs and the prevalence of children with autism in each county.

They found that 1,667 counties had no BCBAs. Of those, 325 neighbored counties that also had none of the providers.
There were 784 counties considered to have the highest access to BCBAs, up to 17 children with autism per therapist. On the flip side, the 129 counties with the lowest access had more than 137 kids with the developmental disability per BCBA.

The study notes that the professional organization for BCBAs recommends that each therapist manage six to 12 clients at a time or 12 to 16 if they are supported by an assistant.

The locations with the greatest access to BCBAs tended to be wealthier and had fewer uninsured residents, the study found.

When the researchers examined the 129 counties with the highest prevalence of autism, they found that 55 of them had zero BCBAs. Nine of these counties also had no therapist in any neighboring counties.

“Importantly, the differences in BCBA distribution cannot be fully explained by the county-level variation of ASD prevalence, suggesting that demand for the treatment of ASD is not necessarily driving provider supply,” wrote researchers from the University of Pennsylvania and the University of Louisville in their findings.
​
They point to the location of training programs and varied reimbursement rates as factors that could be driving the availability of BCBAs in various areas, but said more research is needed to fully understand what’s behind the unequal distribution and how to address it.

​by Michelle Diament | May 7, 2021 
Disability Scoop

Nearly two months after federal lawmakers approved billions in extra spending on disability services, advocates say the money is going unspent because states don’t know how it can be used.

The funding was part of the $1.9 trillion COVID-19 relief package signed by President Joe Biden in March. The law included $12.67 billion for Medicaid home and community-based services in the form of a 10% rise in the federal government’s share of spending on the program between April 2021 and March 2022.

But more than a month after the funds became available, states remain reluctant to tap the money without guidance from the Centers for Medicare & Medicaid Services. That’s because states must spend Medicaid dollars and then seek reimbursement from the federal government, so advocates say states are worried that they could be on the hook for the extra spending if they misstep and allocate the funds for something outside of what CMS deems an allowable use.

“Whether states wanted to use the money for hazard pay for direct support professionals or to make transitions out of large congregate settings, states aren’t willing to take a risk until they get the guidance from CMS,” said Nicole Jorwic, senior director of public policy at The Arc.

The long-sought funds represent the first major investment in the disability services system since the pandemic began more than a year ago. In that time, disability providers have struggled to stay afloat amid rising costs for personal protective equipment, COVID-19 testing, cleaning supplies and other items while also facing reduced revenues as programs were forced to close or participation declined.

Now that they finally won a slice of federal COVID-19 relief, however, people with disabilities and service providers are continuing to languish.
“There are people all over the country who have been waiting for programs to reopen,” Jorwic said. “They’re going to keep waiting because states need to know how they can use this money and states need to know that they’re going to get reimbursed.”

Complicating matters is that state Medicaid programs may need approvals from their legislatures to make use of the extra dollars.

“Due to the time constraints of state legislative sessions, many self-advocates and providers are having to pressure their states to commit the money to DSP wages, benefits and other essentials while states are simply waiting to hear from CMS,” said Sarah Meek, senior director of legislative affairs at the American Network of Community Options and Resources, or ANCOR, which represents disability service providers across the nation. “There is a lot of worry that the money won’t actually get to people receiving HCBS and their DSPs as Congress intended if CMS guidance is not released soon.”

A CMS spokesperson told Disability Scoop that they agency is working to release guidance “as soon as feasible.”​

“We understand how important it is that states receive this guidance as soon as possible, to inform their strategies for investing the increased funding so that beneficiaries with long-term services and supports needs receive the assistance required to live in the setting of their choice,” the spokesperson said. “In the meantime, CMS encourages states to be collaborating with their stakeholders to understand their top priorities for strengthening home and community-based services systems.”

Long plagued by high turnover and low pay, new research suggests that the COVID-19 pandemic further amplified the extraordinary pressures on direct support professionals who help people with developmental disabilities in their day-to-day lives.

A survey of more than 8,800 DSPs from across the nation finds that the pandemic squeezed workers in an already difficult profession.
Nearly half of DSPs reported that they had been exposed to COVID-19 at work. And, even though 97% of those surveyed considered themselves essential workers, only about a third received a pay bump or bonus during the pandemic.

The findings are outlined in a new report from the University of Minnesota’s Institute on Community Integration and the National Alliance for Direct Support Professionals. The study is based on a survey conducted between November 2020 and January 2021 that researchers say is the largest of its kind.
The majority of DSPs said that since the pandemic started they have worked at least as much or more than they did previously. Just over half said the places where they work are adequately staffed and only 51% said they are guaranteed paid time off if they display symptoms of COVID-19.

Three-quarters of DSPs indicated that they have been trained to use personal protective equipment and 81% said they had a sufficient supply of the safety gear.
Most DSPs said that the people with disabilities they support are social distancing at a level they consider “good” or “excellent.” However, they indicated that the pandemic has taken a toll on their charges who miss going out into the community and have had less exercise, increased behavior issues and mood swings, anxiety, loneliness and boredom.
​
“These findings underscore a number of systemic problems regarding the direct support workforce that provides services and supports for people with intellectual and developmental disabilities,” said Amy Hewitt, director of the Institute on Community Integration’s Research and Training Center on Community Living and a lead author of the study. “Turnover, vacancies and low wages — a national average that is just more than $12 an hour — has devastating effects on these professionals and, subsequently, on people with intellectual and developmental disabilities.”