NYC may soon require employers to accommodate caregivers
Plus: 25 years ago, Olmstead made institutionalization illegal; and Indiana families fight back over state barriers to paid family caregiving
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From SILive: “This NYC bill would require employers to provide accommodations for caregivers of people with disabilities”
STATEN ISLAND, N.Y. — Mariners Harbor resident Richard Quinn serves as the primary caregiver for his non-verbal autistic son while also maintaining a full-time job with the city Department of Transportation (DOT).
On Tuesday, he shared a bit about the challenges he faces caring for his son when he became a single parent about a year ago. But employed caregivers, like Quinn, could soon have it a little bit easier if a piece of local city legislation becomes law.
The law, sponsored by Councilwoman Kamillah Hanks (D-North Shore), would require employers to provide accommodations to their workers who also serve as caregivers to people with disabilities.
“This is going to be able to help out a great deal,” Quinn said. “I think it was really a thing where it’s just blind spots. Like, if you don’t live it, you don’t know it.”
[…]If passed, the legislation would update the city’s Human Rights Law to require employer accommodation considerations to the caregivers of people with disabilities, who are already protected by the same law.
Accommodations can include greater work from home allowances or flexible scheduling to allow employe[e]s to better care for their loved ones with disabilities. […]
• From STAT: “Supreme Court outlawed segregation of disabled people 25 years ago. But change has come slowly”
[…]Prolonged, involuntary stays in institutions used to be the norm for people with disabilities, as books like “One Flew Over The Cuckoo’s Nest” have portrayed. But after two Georgia women with mental illness and developmental disabilities sued to leave a state hospital, the Supreme Court decreed in 1999 that siloing people with disabilities in hospitals was discriminatory and a violation of the Americans with Disabilities Act.
This landmark ruling, known as the Olmstead decision, augured a shift away from institutional care for long-term services and towards the most integrated setting possible — treating people with disabilities not as outcasts but as community members who can make choices and decide their own futures. The name refers to the main defendant, Tommy Olmstead, the commissioner of the Georgia Department of Human Resources at the time. Some experts refer to it as the Brown v. Board of Education for people with disabilities because of its dramatic expansion of civil rights in the face of forced segregation and a rejection of “separate but equal” institutions.
The change was long overdue, said D’Arcy Robb, Georgia Council on Developmental Disabilities executive director. People were disappearing. “At one point in our society, if a person was a “problem” or seen as a “problem,” it was so easy for their rights to just evaporate, for them to just be sent into an institution,” said Robb. “And many times, folks never got out.”
Twenty-five years after the Olmstead decision, home and community-based services (HCBS) is the norm rather than the exception for Medicaid recipients. National Medicaid spending on HCBS routinely exceeds spending on institutional services, and nearly 10 million people received some form of HCBS in 2019. Most states now have “Olmstead plans” that sketch out how to further grow community care, too.
But those gains are unevenly distributed, and disability advocates have had to sue several states to ensure their compliance.
“It doesn’t flip a switch and make the problems go away, but it sets a beacon and says this is the way we’re going,” said Robb.
The original lawsuit was filed locally by Atlanta Legal Aid on behalf of Lois Curtis in 1995 and then soon after included Elaine Wilson. Both women had asked to receive community care, and doctors had deemed them fit to do so. But their respective hospitals denied their requests. They remained behind locked doors for years, until Legal Aid stepped in and represented them in Olmstead v. L.C.
[…]Two months later, Justice Ruth Bader Ginsberg announced a 6-3 decision whose ramifications are still being felt today: If a disabled person wants to receive community care, and it’s “reasonable” for the state to provide such care, they cannot be denied such care. […]
• From Indiana Capital Chronicle: “Parents of medically complex children decry newest FSSA barrier”
Several parents of medically complex children raised alarms Thursday about a new barrier implemented by the state government for personal attendant hours, part of the ongoing struggle between the groups over changes to government support for families.
The assembled group, part of Indiana Families United 4 Care, contend that the Family and Social Services Administration (FSSA) added a new condition for families on Tuesday, just 11 days before qualifying Medicaid recipients and their caretakers must make the transition to the Structured Family Caregiving program.
“Families are scrambling once again due to FSSA changing the rules at the last minute,” said Jennifer Dewitt, a mom whose son has complex medical needs.
[…]FSSA, however, said there have been no policy changes.
“FSSA has not told waiver members and their families that the same individual could be both the paid principal caregiver of Structured Family Caregiving and the paid provider of Home Health Services. Medicaid has never allowed the use of taxpayer dollars to pay the same person twice for delivering essentially the same service,” the agency said in a release.
[…]Dewitt said that providers and FSSA had assured families they could retain their skilled care coverage and certification for such services, which requires hours of training to obtain, and also use Structured Family Caregiving. Parents also said that FSSA didn’t announce the change explicitly, but rather updated a two-month old document.
“Changing the rules at the eleventh hour and burying the changes in a two-month old document and not directly notifying providers is unconscionable. Parents are trying to manage an already difficult and complex situation, and having a state agency that can’t seem to decide on the rules we have to abide by creates unnecessary pain, anxiety and confusion,” Dewitt said.
[…]The lives of medically complex children are already uncertain. Unplanned hospitalizations can dim a child’s future prospects while a revolutionary treatment can extend dismal life expectancy predictions. Families like Dewitt have gone bankrupt trying to provide care to their children and the state’s attendant care program provided a rare opportunity for financial stability for many while it existed.
She concluded by saying families needed a steady program, something that wasn’t “constantly… in flux” and that also acknowledged the need to pay parent caregivers a living wage.
“This is a massive change; this isn’t just something small. And it’s going to impact these families in such a negative way,” Dewitt continued. “… We’re literally setting these families up for failure and it didn’t have to be this way.”
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