Under the latest iteration of a law known as the Autism CARES Act, which took effect last fall, the IACC is set to grow in size. The number of self-advocates, parents and autism group representatives on the panel will increase from two to three each. And, there will be members from the U.S. Departments of Labor, Justice, Veterans Affairs and Housing and Urban Development.

In one study, participants with intellectual disabilities were the only ones who reported wanting to remain homeless. Study participants with intellectual disabilities were less likely to remember their original home address and less likely to reintegrate with family members.

People with intellectual disabilities are more likely to become homeless at an older age due to the breakdown of a relationship or the death of a primary caregiver. They are more likely to have difficulty accessing health care services because of their disabilities.

When the state let expire a pair of emergency rules that mandated staff testing at nursing homes and assisted living facilities, Agency for Health Care Administration Secretary Mary Mayhew said they could expire, in part, because nursing homes would still be required to test staff under a federal rule. Nursing homes are receiving rapid testing kits from the federal government to comply with the rule.

But the federal rule does not require assisted living facilities, what are known as intermediate care facilities for people with developmental disabilities or group homes to test staff members.

So she signed onto a class-action lawsuit alleging school districts nationwide are illegally denying services to special needs children that are federally mandated, through individualized education programs, known as IEPs. It's also the first legal challenge in the nation to demand what's called a “pendency voucher,” which would provide funding for families to hire private aides in school districts not yet open full-time.

New York City attorney Patrick Donohue, whose own daughter has a traumatic brain injury, says the suit began with a few families across New York and New Jersey. But then horror stories started pouring in from across the country. “One parent is a single mom who has two autistic children, she had to quit her job…It's really pulled back the scab of what millions of families go through every year. And it's insane that you have a federal law that's supposed to protect them, but they're basically ignoring the rights of these families.”

Now, there are 500 plaintiffs from 35 states, including 214 from New York, 48 from New Jersey and 18 from Connecticut. “Towards students with disabilities that there is an overall opinion among a lot people that they matter less. And I think that the pandemic and the closure shed light on that. I think it shed light on a lot of discrimination and bigotry that exists in the educational systems,” says Donohue.

Garcia is not alone. In California, parents who suspect their child has a developmental delay often wait months or even years to get a formal diagnosis and to obtain services, according to research by the First 5 Center for Children’s Policy. By the time these children receive treatment — which is often contingent upon getting a diagnosis — they may have missed out on a critical window of time during which interventions for disorders such as autism or Rett’s Syndrome can be most effective. These delays have likely become more acute during the pandemic, as families are less likely to be visiting doctors for check-ups and children aren’t interacting as much with early childhood professionals who can spot signs of developmental challenges, experts with the First 5 Center said.

"They're going to be getting 50% less in reimbursement rates from the state," said Reek, a parent and executive director of the Autism Society's Nassau/Suffolk Chapter. "It's frightening because there's a shortage of housing on Long Island as it is."

And this is not just happening on Long Island. Parents across the state are facing the same hardships.

Susan Constantino, the president and CEO of the Cerebral Palsy Association of New York, is asking the governor for help. 

"Tell us the amount and let us come to you with how we think we could do this versus you taking 20% off everything because this will hurt more," she said.