People With IDD Are Helping Providers Improve The Vaccination Experience

Aubrey Whelan, The Philadelphia Inquirer/TNS • May 07, 2021
A stack of vaccine cards wait to be handed out after individuals receive their Moderna COVID-19 vaccines. (Kimberly P. Mitchell/Detroit Free Press/TNS)

PHILADELPHIA — When Natasha Black learned that she was eligible to get a COVID-19 vaccine, she said she was excited — and hopeful that daily life might finally get back to normal.


Black, a member of a self-advocacy group for people with intellectual disabilities, had spent the year away from family, friends and work. Isolated in her group home in the Pennsylvania suburbs, she missed being able to take walks, chat with neighbors, play a game of pickup soccer.


“I was staying at home every day — we couldn’t do nothing,” said Black, who knew she needed to be especially careful not to get coronavirus. “I was worried. I was bored. I had some hard times,” she said.


People with intellectual disabilities are at much higher risk of contracting COVID-19 than the general population, but most were not recommended for higher priority for vaccination by the Centers for Disease Control and Prevention. (Some states did prioritize people with intellectual disabilities, and advocates campaigned for higher prioritization in others.)


A study published in March by Thomas Jefferson University researchers that looked at more than 64 million patients found that having an intellectual disability was the “strongest independent risk factor” for contracting COVID-19.


People with intellectual disabilities were also more likely to die from the virus. Old age was the only risk factor more connected with death from COVID-19, the study found. What’s more, people with intellectual disabilities who were hospitalized with the virus were six times more likely to die.


There are a few reasons why intellectual disabilities can make people more vulnerable, said Wendy Ross, a physician, director of Jefferson Health’s Center for Autism and Neurodiversity, and one of the study’s authors.


But people living in communal settings like skilled nursing facilities, or suffering from other high-risk health issues are not the only members of the intellectual disability community at higher risk of the virus, she said, since the study also controlled for people in those categories.


Some people with intellectual disability have sensory issues that make it harder to wear masks for long periods of time, Ross said. Others who live at home may have therapists and other support staff stopping by, which may expose them to the virus. Many are more likely to use public transportation to get around, another route of exposure.


But whatever the reasons behind the heightened risk, Ross said, the study showed it was imperative to vaccinate people with intellectual disabilities.


After she and other advocates pushed for their patients to be prioritized for vaccination, Philadelphia health officials began to do so in March.

But achieving vaccine prioritization was just one part of the fight. The next was making it easier for people like Black and the members of her self-advocacy group to access the vaccine.


“(People with intellectual disabilities) tend to be less hesitant — they know they’re at risk. They didn’t need a study to know they were at risk. They live it every day,” said Ross. “But our goal is not really to convince people to get vaccinated. Our goal is to make it as accessible and as easy as possible.”


Ross and other Jefferson physicians met with self-advocates like Black, whose group is run by Carousel Connections, a Philadelphia-area training and support program for people with disabilities. In focus groups, Black and others spoke about how to make the vaccination experience easier.


“Headphones — that’s one of my calming tools,” Black said. Others requested sunglasses to help deal with light sensitivity, fidget devices to distract them, or shot blocker discs — devices sometimes used to lessen the pain of injections. Ross and her colleagues also recommended that vaccinators spend a bit more time with patients with intellectual disabilities.


“The advice (focus group members) gave was advice everyone could benefit from,” Ross said. “What you see, underlying, is, ‘Just be nice to me, and be positive and encouraging. Distract me — ask if I have a favorite song. Tell me I’m doing a good job.’ Who doesn’t benefit from all these things?”


Members of Carousel Connections’ self-advocacy group who had already been vaccinated said they were looking forward to returning to some kind of normalcy.


“(When I heard about the vaccine), I was ready to go get it. I can’t wait to hang out with people,” said Gerard Hasson, who works in maintenance and landscaping at a school in the suburbs. His advice for getting the shot? “Don’t be nervous.”


The group, led by Carousel Connections program director Amy McCann, discussed their worries about contracting the virus, how they might get the vaccine, and what to expect when their turn did come.


“Not knowing when they could get it was really hard,” McCann said. “We talked about why hospital workers went first, and about waiting our turn — and with Dr. Ross we really helped to advocate why our community was in need of it, too.”


Owen Ahearn-Browning, another self-advocacy group member, said he’s still nervous about contracting the virus, even after his vaccine. “I wear a mask, I wash my hands, I stay my distance,” he said. “I’m still scared of the virus.” He said talking with family members about how he feels has helped. So has looking forward to everything he can do now that he’s vaccinated.


Black, who worked three jobs before the pandemic, found herself at home all day as pandemic lockdowns began. It was an abrupt, and sometimes rocky, adjustment. But she was able to get vaccinated at her group home recently.


“I’m looking forward to being with my family — and not just with my family. I can’t wait to go to work when this whole thing is over,” she said.

Ross said Jefferson physicians are working to vaccinate people with intellectual disabilities inside and outside their health network — essentially anyone who reaches out for an appointment — as well as their caregivers, and implementing the recommendations from the focus groups.


They’re also advising larger vaccination sites that are geared toward the general public, so that they can better accommodate neurodiverse individuals.


“What we’d like to see for them is that all of them have some training or education,” she said. “Maybe the first hours of the day can be reserved for this population, or be scheduled slower. They don’t have to change everything, but we do feel strongly that everyone should have some background on this population.”


© 2021 The Philadelphia Inquirer
Distributed by Tribune Content Agency, LLC

The Social Security Administration is changing its rules related to rent or shelter expenses.
By Michelle Diament 25 Apr, 2024
The Social Security Administration is making another update to how it calculates Supplemental Security Income benefits, this time to ensure its rules are applied more equitably across the country. The agency finalized a rule [01] this month adjusting how it handles so-called “in-kind support and maintenance” in the form of a rental subsidy. Under existing policies, individuals with disabilities can see their SSI benefits reduced if they pay rent or shelter expenses that are lower than the current market value. This often comes into play if a beneficiary is living with a family member who charges less than they would pay on the open market, for example. However, because of court rulings, there is a different standard in place in seven states — Connecticut, New York, Vermont, Illinois, Indiana, Wisconsin and Texas. For SSI beneficiaries in those states, monthly payments are not reduced if an individual is spending more than a third of their income on housing even in cases where their rent is less than the current market value. With the new rule, Social Security will apply the less stringent standard nationwide. As a result, the agency expects that about 41,000 people will see their SSI payments rise by an average of $132 per month. In addition, an estimated 14,000 more people are expected to qualify for SSI each year. “Our mission is to continue to help people access crucial benefits, including SSI,” said Martin O’Malley, commissioner of Social Security. “Simplifying and expanding our rental subsidy policy nationwide is another common-sense solution that will improve program equality and will reduce agency time spent calculating and administering rental subsidy.” The new policy is set to take effect Sept. 30. The rule change is part of a wide-ranging effort from the Social Security Administration to reconsider how it handles nuances of the SSI program. Last month, the agency said that it would stop counting food [02] as part of “in-kind support and maintenance” beginning this fall and a rule issued last week [03] changes how Social Security factors support from other public assistance programs when calculating SSI payments. Citations: [PDF] Expansion of the Rental Subsidy Policy for Supplemental Security Income (SSI) Applicants and Recipients: https://tinyurl.com/mr356mj2 [Article] Social Security Finalizes Change To SSI Benefits: https://tinyurl.com/ycxwz5xd [PDF] Expand the Definition of a Public Assistance Household: https://tinyurl.com/2v6kyx85 Original Article: Social Security Tweaks Rules For SSI: https://tinyurl.com/2h86z68b
The Social Security Administration will ease its rules related to food assistance for people with di
By Michelle Diament 10 Apr, 2024
The Social Security Administration is moving forward with a major change to the way it calculates monthly Supplemental Security Income benefits for those with disabilities. The agency said that starting this fall it will no longer factor food when determining what’s known as “in-kind support and maintenance.” Under current rules, SSI benefits can be reduced — in many cases by about a third — if someone else routinely provides meals or groceries to a beneficiary. Now, that’s set to change. “A vital part of our mission is helping people access crucial benefits, including SSI,” said Martin O’Malley, commissioner of Social Security. “Simplifying our policies is a common-sense solution that reduces the burden on the public and agency staff and helps promote equity by removing barriers to accessing payments.” In a final rule published late last month, the Social Security Administration said it will stop considering food expenses in calculations of in-kind support and maintenance as of Sept. 30. The agency will continue to factor shelter expenses meaning that SSI benefits can be docked if a beneficiary does not contribute to rent, mortgage or utility costs for their residence. The change will limit the amount of information that SSI beneficiaries must report, ensure that rules are easier for everyone to understand and reduce variability in SSI payments from one month to the next, officials said. In addition, Social Security expects to see administrative savings since the agency will no longer have to spend time monitoring food provided in-kind. Even with the update, however, Social Security said that it will continue to ask beneficiaries who live in another person’s household if someone else in the home pays for or provides them with all of their meals. Disability advocates welcomed the new rule. “In-kind support and maintenance calculations are often ridiculous and cruel, causing SSI recipients to lose benefits over things like sleeping on someone’s couch or getting help paying for groceries,” said Zoe Gross, director of advocacy at the Autistic Self Advocacy Network. “No one should lose needed benefits because of things like this. By exempting food from ISM, the Social Security Administration will make it easier for people receiving SSI to get help with food and nutrition. This especially impacts people who live with friends and family, as many autistic people receiving SSI do.” The update could have broad implications, with the Social Security Administration saying that it reduced the benefits of 793,000 recipients as of January 2022 because they received help with food or shelter. The rule change is one of “several updates” that Social Security said are in the works for SSI regulations, all aimed at helping people receiving and applying for benefits under the program. About 7.5 million Americans receive SSI each month, with a maximum federal benefit of $943 for individuals and $1,415 for couples. Citations : Original Article, Social Security Finalizes Change To SSI Benefits , can be found here: [DISABILITY SCOOP] https://tinyurl.com/3w6ru3hs
Golf ball near hole.
By Areyhon Collick 21 Feb, 2024
47ABC – United Needs and Abilities (UNA) is gearing up for its annual Disc Golf Tournament in May and it’s Charlie Mac Open Charity Golf Tournament in September. UNA provides services to those with disabilities in all 9 counties on the Eastern Shore. Some of those services include residential support, drop-in service, personal support and a cash back program to help fund those in need. We sat down with representatives of the organization who shared more with us about the tournament and how it will benefit the community. They say the money raised from these events go to support those in need of help in the community. Money raised in the past has helped them install ramps to homes, purchase custom wheelchairs, and fund special needs summer camp programs. They also say the organization is always in need of an extra hand! There are plenty of volunteer opportunities, but becoming a sponsor can make all the difference. The 1st annual disc golf tournament will be May 16th and the Charlie Mac Open Charity Golf Tournament will be September 26th. To register and learn more visit https://una1.org Read original article & watch newscast here: [WMDT] http://tinyurl.com/4hebkvf2
Paper cut outs of a home and family of three under a Medicaid umbrella.
By Annie Korp 14 Feb, 2024
New research estimates nearly 40,000 youth with autism and intellectual & developmental disabilities were in the U.S. foster care system in 2016.
By Nick Lannelli 13 Nov, 2023
Epilepsy, a broad term used for a disorder that causes seizures, can often be misunderstood, which is why a D.C. mother said she is working with local lawmakers in an effort to increase awareness in schools. Mollie Ellis, who has an 8-year-old daughter with epilepsy in the D.C. public school system, said she has endured disturbing situations involving nurses and school employees who have no idea how to handle her daughter’s condition. In some cases, school nursing staff members have refused to give the girl her prescribed medication, Ellis said. “We’re really on top of making sure the school has all the paperwork and proper medications as prescribed by her doctor,” Ellis said. “But we still have run into several times over the last three years when she was denied her medication.” Some of the reasons for refusing to give the girl her medication have included staff members not understanding epilepsy, or not being fully comfortable giving children such medication, according to Ellis. In March of this year, however, one situation became serious. “She was denied her medication and ended up having several seizures that were entirely preventable had she been given her medication,” Ellis said. Ellis said she is working with D.C. Council members in an effort to get new regulations implemented across the city’s public school system. Council member Charles Allen released a statement on social media, endorsing the idea. “Living as a young person with epilepsy is a challenge, but one that we can make easier by making sure our kids have access to necessary care and medication in school,” Allen said. Legislation supported by Ellis and Allen would require school personnel to complete “seizure recognition and first-aid response training,” and would ensure that medication prescribed by a doctor would be administered to a student who has epilepsy. Ellis said that support is growing within the D.C. Council, and she hopes the legislation will be brought forward for a public hearing early next year. “Our teachers need to know what to do in case of an emergency,” Ellis said. “They’re going to be the ones to deal with it, so they might as well be prepared for it.” Original Article: [WTOP] https://wtop.com
Rashawn Williams at a Cheesecake Factory restaurant on Friday. He had been missing for six days.
By Theresa Vargas 03 Nov, 2023
Rashawn Williams at a Cheesecake Factory restaurant on Friday. He had been missing for six days in Montgomery County, Md. (Family photo)
Image Banner from the official website of RCSJ.
By InsiderNJ.com 30 Oct, 2023
SEWELL, N. J. – In a partnership that could be a national model for the provision of lifelong services for the developmentally disabled, Rowan College of South Jersey (RCSJ), the Schools for Neurodiversity at the Gloucester County Special Services School District, Rowan University and its medical schools, and Gloucester and Cumberland County governments today announced the creation of the collaborative Academy for Neurodiversity on the RCSJ campus. RCSJ President Frederick Keating announced the new initiative at a press conference today, joined by former Senate President Steve Sweeney; Chad Bruner, Gloucester County Administrator and Rowan University Board of Trustees Chair; Gloucester County Board of Commissioners Director Frank DiMarco: Gloucester County Special Services District Superintendent James Dundee; Dr. Jennifer LeComte, Director of the Rowan Integrated Special Needs Center at Rowan’s School of Osteopathic Medicine, and other officials, parents and students. “What we have created with the Academy for Neurodiversity is a unique collaborative program that should be a national model for integrating lifelong services for the developmentally disabled,” said Sweeney. “In a single location, we offer multiple levels of education and workforce training, medical, mental health and behavioral services, legal advocacy, transportation, athletics and recreation, and today, we did the ground-breaking for an on-site housing complex.” The three-story Residences at South College Drive will provide 24 one-bedroom rent-supported apartments for individuals with intellectual and developmental disabilities with a community room, lounges, laundry facilities and office space for an on-site Counselor of Special Services, said Kimberly Gober, Executive Director of the Gloucester County Housing Authority. The project is being funded with $7.365 million in National Housing Trust funds and $3.75 million in grants from Gloucester County. “Rowan College of South Jersey is fortunate to be strategically positioned in the two counties of Cumberland and Gloucester, enabling the unique relationship between the Schools for Neurodiversity at the Gloucester County Special Services School District, the Vineland Public School District, our dual campus Adult Center for Transition (ACT) programs, and the college’s flagship partner, Rowan University, to facilitate connecting the groups and people that care about neurodiverse individuals,” Dr. Keating said. Dr. Guy Davidson, the RCSJ Dean of Academic Achievement & Special Services who will chair the new Academy for Neurodiversity, said the impetus behind the new initiative is “to strengthen, expand, and enhance the connections and partnerships that are already in place and create new relationships for the benefit of the students and communities that we serve.” “At RCSJ, we’ve been in the business of serving the disabled community in Gloucester County and the surrounding region for a long time,” said Davidson, who will chair the new Academy for Neurodiversity. “With our expansion into Cumberland County and the creation of the Academy, we’re more deeply connecting two regions of people and organizations that have made serving the neurodiverse community their lives’ work.” Commissioner Director DiMarco noted that Gloucester County has been on the cutting edge of a wide range of shared services, from countywide tax assessment and ambulance services to jails, but said the partnerships that have been created to provide coordinated special services to the developmentally disabled have been the most rewarding. “What’s incredible here is the partnerships between RCSJ, Rowan University and our medical schools, the Special Services School District, the two counties and our housing authority that have teamed up so smoothly to serve the needs of those who need our assistance the most,” said Bruner, Gloucester County Administrator and Rowan University Board of Trustees Chair. Dundee, Gloucester County Special Services District Superintendent, said the Schools for Neurodiversity at the Gloucester County Special Services School District are excited by the new partnership. “As Temple Grandin put it, ‘the world needs all kinds of minds,’” Dundee said. “This joint collaboration being celebrated today will enable the Gloucester County Special Services School District to help neurodivergent learners shape their identity and help the world to see the unique strengths of each child’s abilities rather than focusing on disabilities.” “Neurodivergent people experience, interact with, and interpret the world in unique ways and this partnership will enable our students, staff and families to gain the necessary medical, psychological, educational, and social services required in order for students to be successful during their entire academic career and beyond,” he said. Sweeney, who championed programs for the developmentally disabled as both Gloucester County freeholder-director and as Senate president, joined Keating in leading a tour of the Stephen M. Sweeney Center for Special Services’ job training and placement programs and the Bankbridge Developmental Center’s autism unit following the press conference. ORIGINAL PRESS RELEASE: https://tinyurl.com/5djy55bv
Stock Photo by Sigmund on Unsplash.
By Mia Ives-Rublee & Anona Neal 27 Oct, 2023
As COVID-19 cases continue to rise during the fall and winter against the backdrop of recent increases in disability nationwide, it is essential that policymakers take steps to protect workers and help reduce their risk of infection. Specifically, they must create policies and laws that strengthen worker protections, create a federal paid sick leave system, improve air quality, and increase access to updated COVID-19 immunizations, tests, and masks.
A report out this month suggests that Social Security benefits will go up again in 2024. (Thinkstock
By Shaun Heasley 23 May, 2023
Social Security and Supplemental Security Income checks are likely to grow again in 2024, according to a new analysis, though not by nearly as much as this year. A projection this month from The Senior Citizens League, a nonprofit that advocates for seniors, suggests that benefits will increase by around 3.1% starting in January. By contrast, monthly payments from the Social Security Administration rose 8.7% this year, the most since 1981. The increase is due to an automatic cost-of-living adjustment, known as COLA, which is triggered by inflation. The annual adjustment is tied to the Consumer Price Index for the third quarter, which will be announced this fall. The Senior Citizens League’s report this month offers an estimate that’s based on recent trends in the cost of goods. Since 2000, the nonprofit found that COLA has increased benefits by 78%, rising an average of 3.4% each year. During that same time, however, the report indicates that the cost of goods has increased by an average of 6.2% annually. More than 7 million people, including many with disabilities, receive SSI each month. The maximum federal SSI benefit this year is $914 per month for individuals and $1,371 for couples, according to the Social Security Administration, though payments can be higher since some states kick in extra. 
By Javari Burnett 17 Apr, 2023
SALISBURY, Md.- Game rules for the Little League Challenger program are simple: there’s no outs, all players make base, and everyone wins. It’s an inclusive baseball division for individuals with disabilities. “They’re capable and they just need a chance. I think that’s what this is. It’s giving them that chance to show what they can do,” Wicomico Parks & Recs Director Steve Miller said. Saturday marked opening day for season 3, welcoming a record-breaking 60 players across 6 teams. Challenger Tigers Coach Bob Freeman tells us his kids practice weekly and are quite dedicated to perfecting their craft. “Usually, we practice until it gets dark because the kids are having fun. It’s a great time for them to get together with peers, get physical activity, and participate,” Freeman said. A unique feature of the program is that participants are matched with a buddy for support, including players from the Salisbury Club Baseball Team. “I think that baseball is more of an experience. If you can just of kind of share or show that, you can get other people involved. You can get people to feel the same way I felt when I was 4 or 5 years old,” Player and Senior Marketing Major Emmanuel Moore said. “As a player I’m always on the field. Even off the field, I never feel like I’m that helper and I never have a chance to do stuff like this. To hang out with these guys and make them feel involved feels great. It’s such a special game,” Senior Science Major Bryden Stelle said. Wicomico Parks & Recs spearheads the initiative. Executive Director Steve Miller says they raised over a half a million dollars in private funds for program operations, showing the community’s passion to keep these players on the field. “They deserve the same opportunities that everyone gets. That’s the real special part of this field and this effort is how the community rallied and recognized that. Now, there’s that opportunity,” Miller said. Participants came from Wicomico, Worcester, and Somerset counties. Thanks to community support, the program continues to be free for players.
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