Maura Sullivan has two sons with autism who are now homebound amid the coronavirus crisis. As the director of government affairs for The Arc of Massachusetts, a nonprofit disability advocacy group, Sullivan balances the life of a mother and advocate.
With social distancing policies in place, some individuals are finding themselves the sole caretaker of their loved ones with severe disabilities.
“Parents are becoming one-to-one teachers, one-to-one therapists, nurses,” Sullivan said. “And we don’t have the luxury of the outside world to even get a break for a little while.”
Many families are not prepared or used to accommodating their children with severe disabilities for an extended time, Sullivan said.
“Most of our kids go year-round to school. So, a week’s vacation is really the most families have managed in the past,” Sullivan said. “And even with that, you can get outside and you can go to museums and you can go to sensory-friendly movies and things like that.”
COVID-19 has not discriminated against those it infects. However, some disability advocates worry there will be discrimination in care.
“Even without a pandemic, we have a lot of discrimination in health care,” Sullivan said. “There’s a bias that exists that truly affects our health disparities and access already.”
With some states making plans to ration health care in case of overwhelmed hospitals, Sullivan said, the disabled community is left with limited security.
“There are states currently that are rationing health care and they are de-prioritizing people
with disabilities,” Sullivan said. “We are really working to make sure that it is very clear that that is against the law.”
However, Sullivan said these rationing policies most likely won’t be instituted in Massachusetts.
“I know our legislators really understand the needs of our community and they would stand up and really stand for them in this,” Sullivan said. “My concerns are just on the ground, in the hospitals’ decisions that are made outside of any guidance that comes down on a state level.”
Colleen Lutkevich, executive director of Coalition of Families and Advocates, a nonprofit disability advocacy group, said she thinks there must be more policy planning on the state level, but that she doesn’t have as much trust in government inclusivity when it comes to the disabled.
The Department of Developmental Services in Massachusetts deals with intellectually disabled individuals over the age of 22.
Lutkevich said the department manages residential life for those with severe disabilities in intermediate care facilities, state-operated group homes and a large provider network contracted by the state alone includes about 10,000 residents.
However, despite the state having a hand in all of these residential operations, Lutkevich said there is currently no uniform plan for the coronavirus.
“[Each kind of residence is] all kind of doing their own thing. So if you’re lucky enough to get in a place that has given this whole COVID thing some forethought, then maybe you’re okay,” Lutkevich said. “But others are just in a small four-person, group home and they’re saying, ‘Oh, we just can isolate that person in the bedroom.’ It’s not going to work.”
Other resources and plans have been made for vulnerable groups, but disabled people are not yet a part of these plans, Lutkevich said.
“They’re making plans for people from the Pine Street Inn, which is well and good, and making plans to isolate prisoners,” Lutkevich said. “They’re not making plans for people in DDS care at all.”
Lutkevich said DDS’s lack of preparation for the epidemic is setting up the most vulnerable people for exacerbated suffering.
“That’s what’s really disturbing about it. It’s like they’re waiting for everything to hit the fan, “ Lutkevich said. “That’s how people die.”
Lutkevich said she encourages advocacy for a uniform plan from DDS to combat coronavirus spread.
“I think all the providers should be demanding action from DDS, and I think the Arc should,” Lutkevich said. “They’re all funded through DDS… so no one really criticizes them. They just say nice things about them, but I think they should be asking for help.”
Even within a household that has plans in place, Sullivan said it can be difficult to institute new rules for everyone’s well being.
“Our folks don’t do great with all of the precautionary things that we need to be doing,” Sullivan said. “My kids wouldn’t stay six feet away from me. Maybe if I had spinach in my hands or something.”
Concern remains that even with a plan in place, care for sick disabled people will prove difficult.
“They don’t really do the hygiene like they need to without help and they need a lot of help with very intimate hygiene,” Sullivan said. “So it’s very hard for anyone helping and taking care of someone who might be sick to feel safe. And I think that’s sort of the overwhelming piece to me is if [my son] gets sick, what happens to me taking care of the others and myself?”
Additionally, online learning isn’t always conducive to Individual Education Plans, programs of specialized instruction for primary and secondary school children with disabilities.
“My son, his IEP is focused on his activities of daily living skills, some pre-vocational skills and basically behavior management,” Sullivan said. “So those are all things that are really tough to get in [online]. Also, he is not someone who sits in front of a computer. He just wouldn’t.”
Despite the significant and sudden challenges posed to the disabled community, both Sullivan and Lutkevich said the disabled community is one of exceptional strength.
“People with disabilities are very strong,” Sullivan said. “Their families are extremely resilient and we are fiercely protective as well.”
Exclusion is nothing new for disabled people, Lutkevich said, but advocacy creates awareness and an impetus for change.
“When you talk about the elderly, everyone has a grandmother, not everyone has a person in their family with a developmental disability,” Lutkevich said. “Not everyone understands it, they can really be forgotten and they also can’t speak up for themselves. So we’re the only ones that can.”
