Page 24 - Tom Steyer Issue

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 adds.
Cure SMA
Patricia Wright
can overcome a challenge. And if you overcome a chal- lenge, 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 explains.
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 wel- fare of their families and friends, they also always want- ed 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,” Patrica says.
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 every- one. 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.”
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 con- ferences 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 peo- ple 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.
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Colleen McCarthy O’Toole
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