Indiana to cut Medicaid program after $525M transfer; Survey shows caregivers under increasing strain; Disability poverty rising in U.K.
News round-up for the week of Jan. 28
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Medical Motherhood’s news roundup
Snippets of news and opinion from outlets around the world. Click the links for the full story.
Nearly a $1 billion budget gap has caused Indiana to drastically cut and change a program this summer designed to pay parents who take care of their children with disabilities.
[… mom Mimi] Burke was able to get into the attendant care program in 2022 and has been paid $15 an hour full-time plus $22 an hour for overtime.
“An attendant caregiver that is not an LRI (parent or guardian) is unable to clock out and give medication, or assist with a tube feed, breathing treatment, seizure, etc.,” Burke said. “The parent would still have to remain at home in order to deliver all nursing level of care.”
A source within FSSA confirmed to WGN News attendant care providers are not allowed to provide advanced medical care.
Burke believes some skeptics may think families are taking advantage of the program, but wants the public to know that’s not the case for her.
“We are not thriving, we are surviving. (Without attendant care) we are a single-income household. My household makes $50,000 a year. When I tell people that they respond ‘wow, really?’ I’m not ashamed of it. It’s really hard to live in a medically-complex world on that money. We don’t want this program, we need this program.”
Back in April, an FSSA forecast did not predict massive issues to the state’s Medicaid program.
As a result, state budget director Zachary Jackson said it allowed Indiana to move $525 million from Medicaid to the state’s general fund last July, according to the Associated Press.
Rates paid to agencies, which in turn pay parents and caregivers, were also raised.
The tables turned in December when the state found out they need $984 million more than what was initially perceived. Of the $525 million that was moved out of the program last summer, $271 million was directed back into Medicaid to begin to address the gap, according to the Associated Press.
[…]A rally was held at the Statehouse Monday and public comments can be submitted through Feb. 16. Over 13,000 signatures have been collected on an online petition.[…]
• From Disability Scoop: “Caregiving Pressures Mount For Families Of Those With IDD”
With fewer and fewer services available for individuals with developmental disabilities, a survey of thousands of caregivers across the country finds families increasingly strained.
Caregivers say they’ve taken on more themselves and the quality of life for the person they support has declined since the COVID-19 pandemic upended many disability services.
Nearly all caregivers report that they are stressed with a growing number indicating that they are “very stressed.” More than half say that they are very or extremely stressed.
The findings come from a survey of more than 3,100 family members or friends who provide care to individuals with intellectual and developmental disabilities nationwide that was conducted by The Arc and the Research and Training Center on Community Living at the University of Minnesota.
[…]More than 80% of family caregivers said that they are providing more supports because services are less available than they used to be.
Caregivers are more likely to report that they quit their jobs to support a family member with developmental disabilities than they were just a few years ago. And, a majority indicated that they are paying more out-of-pocket for services.[…]
• From Disability News Service (U.K.): “DWP’s ‘truly shocking’ disability poverty stats are ‘terrible indictment’”
The proportion of families with disabled children who are living in poverty rose by nearly a third in two years, even before the cost-of-living crisis, according to a new poverty measurement being developed by the [British] Department for Work and Pensions (DWP).
The measurement – which aims to provide a more accurate way of calculating deprivation – shows that nearly half of all individuals in families with at least one disabled child and one disabled adult in the UK were living in poverty by 2021-22, according to a DWP report published quietly last Thursday.
The new measurement, which calculates “individuals in low resources”, found the proportion of people in families with disabled children who were living in poverty increased from 33 per cent in 2019-20 to 43 per cent in 2021-22.
[…]These figures compare with 17 per cent of individuals in families with no disabled members who were living in poverty in both 2019-20 and 2021-22.
This means that people living in families with disabled children were more than twice as likely to be living in poverty than those in families where no-one was disabled in 2021-22, while those in families with both a disabled child and a disabled adult were more than two-and-a-half times more likely to be living in poverty.
[…]Ellen Clifford, a member of the national steering group of Disabled People Against Cuts and author of The War on Disabled People, said: “It’s very welcome to finally see poverty measures that take account of disability-related costs and which therefore provide a more accurate picture of the scale of disadvantage faced by disabled people.
“This enables us to prove what we know anecdotally and gives greater weight to our calls for a fundamental overhaul of the social security system.” […]
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