ABILITY Magazine contacted three large organizations and their members about the changes in how they operate during the ongoing COVID-19 pandemic. YAI, located in New York State, discussed their current situation in their housing facilities as well as their COVID-19 database, which offers information for people with (intellectual) disabilities. NEXT for AUTISM described what the pandemic means to their members with autism and how they adapted to social distancing and isolation. And Cure SMA shares a very unique way of supporting their members with spinal muscular atrophy during these challenging times. Additionally, community leaders and members of these organizations provided the perspective people who rely on these essential services.
YAI
YAI was founded in 1957, and since then, it has grown to be one of the largest organizations supporting people with intellectual and/or developmental disabilities (I/DD). Their early mission statement of a “total life adjustment approach, emphasizing personal growth, social responsibility, employment goals, and the development of independence for the individual” still holds true. Today, YAI offers more than 200 different programs, everything from housing to health care to schools for the I/DD community. Since most of their programs are based in the greater New York area, they have been impacted particularly hard by COVID-19.
“Yes, the situation is very different for our residents and also for the staff because the people we support are usually in a day program or they go out to work. And those things aren’t open right now. COVID-19 has changed the overall environment and what’s possible to do,” says Chris Bocachica, the residential supervisor at the Vista Court IRA in Hudson Valley. YAI had to find new ways to engage their residents while still maintaining a safe distance.
“We tried to develop new programs. We do Spanish lessons, Zumba classes, or just random dance parties throughout the day,” Bocachica adds, smiling brightly. Bocachica ’s job is to ensure all programs run smoothly and that the staff, as well as the residents, are protected and safe. As the leader of the house, he is the one that has to keep things level. “We are all in this boat together and try to get out the best that we can,” he says.
Unfortunately, due to COVID-19, YAI has lost residents, which has had a significant impact on the staff and the people YAI supports. “We still have some individuals that are in the hospital. We are hoping for the best, and it looks like there is a big turnaround. But it is challenging to help everyone cope with the loss of someone, which they haven’t experienced in a long time,” Antoinette Powell, Senior Supervisor at the Woodside Residence, explains.
PODCAST: Listen to the interview with Antoinette and Chris (YAI’s COVID-19 response) on ABILITY Magazine’s new podcast channel
YAI is committed to ensuring that the people they support are protected and cared for. YAI has several COVID-19 protocols in place. At the Woodside residence, the staff separated all four floors, and each resident is quarantined to their own floor. Each floor has individual food, a separate kitchen, and personal equipment like iPads. Vista Court IRA has checklists that are provided to everyone on how to clean surfaces, doorknobs and anything that should be sanitized more frequently. Fortunately, YAI has not experienced a shortage of protective supplies like some hospitals in the NY area. They have received numerous donations and even had volunteers creating handmade masks.
Bocachica and Powell both have this dedication and compassion for their residents and prioritize the safety and well-being of their residents above all.
Many people with disabilities are at higher risk of developing serious complications of COVID-19, but some may be at an even greater disadvantage, says a new report by Syracuse University. It suggests that “people with intellectual and developmental disability (IDD) are dying from coronavirus (COVID-19) at startling rates.” Their publication indicates that this might be “due to the slow pace at which the disability service structure has responded to the pandemic.”
YAI, on the other hand, found a quick and innovative way to support people with I/DD. YAI LINK, YAI’s Information and Referral Department, created a resource, offering information about all things related to COVID-19, from information related to entertainment to emergency resources for accessing food and financial help. Caroline Dunn explains, “People are sending us information that they think is important. Then a linkster, someone who is an information specialist or supervisor in the LINK department, reads through it and determines if this information is useful and whether it is new or outdated.” Dunn, who started working with people with developmental disabilities as an undergrad, shared, “This is exactly where I want to be and who I want to be helping,” referring to her motivation to be part of the LINK department.
To ensure LINK is as inclusive as possible, it uses language understood at a second-grade reading level and includes a Spanish language area. Most LINK resources are tailored to people with I/DD, but others, like a mindfulness app, can be used by people with or without disabilities.
“So much is going on right now that is really overwhelming. And when you add in the fact that someone is either a person with a developmental disability or supporting someone with an I/DD, it compounds upon that and makes those stressors more difficult,” Dunn says.
YAI’s COVID database is constantly growing and updated. While people with disabilities aren’t always considered by our country’s leaders during the crisis, YAI has found a way to close this gap for their community to make sure they are safe, protected, and cared for.
NEXT for AUTISM
NEXT for AUTISM is an organization dedicated to improving the lives of people with autism by developing and launching innovative programs. “Over the last 15 years, we have started a charter school, and developed programs for recreation and leisure, community living and employment with a focus on teens and adults,” says Dr. Patricia Wright, a clinician and educator currently employed as program developer.
Dr. Wright has been working in autism service and support for over 30 years. “I am someone who is committed to social justice, and I understand that people with disabilities in our current society are not afforded the same opportunities. We are seeing this within the current healthcare crisis–but I have seen this in my work all the time, and I want to change that,” Dr. Wright explains.
Like YAI, NEXT for AUTISM is based in New York and operates several programs in New York City. And, like a multitude of organizations there, NEXT for AUTISM has felt the effects of COVID-19. The charter school has been closed and students are at home. Dr. Wright said. “They are all receiving their instructions virtually. Some individuals with autism are more successful in that format. Some require a lot of support. So, NEXT for AUTISM focuses on trying to help the parents and the care providers to deliver this support, knowing that they are also highly impacted by the experience.”
According to Dr. Wright, these massive disruptions in routine can be challenging for some people with autism. Therefore, NEXT for AUTISM has released digital content with information that helps to reduce anxiety and outline strategies to work from home. “A lot of people with autism benefit from visual information, so we write things down for them. We make sure we provide lists. Lists are helpful for all of us, but they are especially beneficial for people with autism,” Dr. Wright explains.
When COVID-19 hit New York, NEXT for AUTISM took immediate action to support and adapt to needs of their community. They set up a relief fund to provide protective equipment to the Arc Westchester. They also made sudden changes to their internship program, Project Search, which teaches employment skills at New York Presbyterian hospital.
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An intern at Project Search, Nicholas Santoro explains the program, “(I learn) time management. To clock in out at the right time. I also learn to dress professionally because if you want to find a job, you have to look professional”
Santoro has autism and has been part of Project Search since September 2019. Due to COVID-19, the program couldn’t continue in person, so they decided to switch to a remote internship, which pleased Santoro. “Thank God it is not canceled,” he says, “Project Search created alternatives, like working from home. And it’s a good skill to learn. Because if you can work from home, you can overcome a challenge. And if you overcome a challenge, someone will hire you. If there wasn’t a Project Search, a lot of kids in the future would have trouble finding a job.”
During his internship, Santoro delivered packages, cleaned the storeroom and floors, did the inventory, and creates spreadsheets. His favorite job was in IT, and he would like to work for UPS after his internship. “I want to figure out where I can do data entry in my area. I looked on Indeed, and there were two jobs. I just really hope that if I walk over there, they won’t say ‘no, we don’t have a job available’ because it is such a good fit for me,” Santoro explained.
However, some parts of this pandemic might not be all bad for some that Dr. Wright works with. “I have heard from some of my friends with autism that while they, of course, are gravely concerned about the health and welfare of their families and friends, they also always wanted to work from home, but their job did never afford that. And I think that’s true for many individuals. There are pieces of this crisis that have allowed us a window into other creative opportunities. With crisis sometimes comes creativity. And these creative solutions for some have become a silver lining,” Dr. Wright said.
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When asked if she would like to see some local policies changed regarding people with disabilities, Dr. Wright responded optimistically. “We know people with disabilities that got infected with COVID-19 have been alone in hospitals, and that’s heartbreaking. But it was the protocol. Most recently, this has been modified, so that someone is allowed to be there with them as their advocate and to assist them with communication and decision-making. I think the health community saw that this previous protocol isn’t going to work and that those individuals do not receive the best care. And we know our healthcare providers want the best for everyone. That is just one example of how we have to make sure that everyone gets what they need. For people with autism and I/DD, that means they need an advocate with them.”
NEXT for AUTISM was involved in this discussion as well. They made sure their members knew about their rights and had all the proper information if they needed to go to the hospital. “Things are moving so quickly, and the health system is so burdened that we want to make sure that everyone is working together,” Dr. Wright added.
Cure SMA
Cure SMA is a health organization that supports people living with a condition called spinal muscular atrophy (SMA). “Our whole organization is dedicated to research on the disease as well as care and support. We do everything from funding research to organizing conferences for medical providers, for researchers, and, most importantly, for the family. We have an abundance of support programs available for our families – all the way from getting diagnosed to adulthood,” Colleen McCarthy O’Toole, Vice President of Family Support and Events, said.
People with SMA are at high risk of developing severe complications from COVID-19 due to compromised lung function. Therefore, the current measures of social distancing and isolation are much more serious for people living with SMA. “SMA families are accustomed to being in quarantine. They are often quarantined through the whole flu season as it is. So, they have already been isolated since the flu season started, and in spring, they were supposed to come out,” McCarthy O’Toole explains.
With COVID-19, they will be forced to continue their isolation for much longer. McCarthy O’Toole noted, “SMA families are so equipped to coping with this. And I think they have been handling the situation a lot better than most people because they are used to staying away from germs.”
During these difficult times, Cure SMA supports their members in creative ways. They offer frequent webinars about staying safe during the pandemic and focus on constant education and giving out resources. “One of the biggest things that we have been really excited about was offering all the SMA families the opportunity of receiving a COVID-19 support package,” McCarthy O’Toole states. The organization sends out surprise boxes with hand sanitizer, wipes, gels, tissues, and items to keep adults and kids occupied. To date, they have delivered more than 1000 of these packages.
Jaclyn Greenwood, a 31-year-old genetic counselor from Southern California, received one of these boxes from Cure SMA. The young woman lives with SMA type 2, which causes muscle weakness all over her body. She uses a power wheelchair for mobility. “I also need support with daily activities of living, such as transferring, bathing, or dressing,” Greenwood says. Because of SMA, she has a compromised respiratory system and is more susceptible to respiratory diseases. Therefore, Greenwood needs to follow strict isolation protocols to protect herself from getting infected.
“It’s hard to cope with. It always feels like there is a dark cloud hanging over you. You honestly just try to control what you can control. Focusing on your daily life, keeping a routine, staying busy, finding a distraction,” Greenwood explains. “We are in a marathon right now, and we aren’t even half-way through this. I think it is the uncertainty about what this is going to become and how long it is going to last that’s so challenging,” she added.
So far, she has only left her house once to go to a doctor’s appointment for an essential treatment she couldn’t postpone. The support from Cure SMA, where she is currently on the board of directors, has helped her to cope with all the worries. “I have been very proud of Cure SMA and how they adapted. I got my COVID-19 care package on Wednesday, and it was so nice to open it and get surprised. Additionally, they have also provided gift cards where you can choose from Amazon, Grubhub, and more,” Greenwood said.
An area Cure SMA monitored closely was the recently implemented triage protocols in particular states that have been criticized for putting people with disabilities at a disadvantage if they got infected with COVID-19. Fortunately, so far, McCarthy O’Toole hasn’t heard of any such cases related to SMA. “The protocols have since then been updated,” McCarthy O’Toole clarified.
Nevertheless, the situation is still unnerving for people living with SMA. “It is a little scary to think that you might not qualify for treatments that you need. My life is worth living. And I want to be given every chance to fight this if I get sick with COVID-19, just like anyone else,” Greenwood stated.
When asked what she wished non-disabled people would understand about this situation, Greenwood summarizes it quite well: “We are all in the same storm, but we are in different boats. I am really thankful for anyone in this world that has sacrificed so much to protect those of us who are high-risk. It’s really incredible to see how we all came together.”
Every person with a disability has to adapt to surroundings, limitations, and access barriers. They are used to finding innovative solutions for their problems, and they are resilient. Because they always had to be. These characteristics certainly helped all the workers and members of these organizations to cope with the uncertainties of COVID-19.
During a health crisis that has particularly affected people with disabilities negatively, the work of organizations supporting more vulnerable populations is critical. YAI, NEXT for AUTISM, and Cure SMA managed to face the pandemic head-on and adapted their services to protect, educate, and support people with a variety of disabilities.
YAI, NEXT for AUTISM, and Cure SMA continue to do their best to protect the people they serve and help their members to get through this together with compassion, resilience, and adaption – all skills many people with disabilities had to master while living in a society not equipped to provide inclusion for everyone.
Many are the front-line workers who are unified in their dedication to their communities. “That’s a choice that I made. I am committed. I am committed to the field and to the people I support. So, this is a risk I am willing to take.” Antoinette Powell, YAI’s senior supervisor.
by Karina Ulrike Sturm
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