For the First Time, National Caregiver Study Includes 4 Million Family Caregivers to Children, Highlights Paid Family Caregiving Options
Plus: How the government shutdown is affecting disability organizations; and New York advocates from the left and right see need for higher caregiving wages
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From the AARP and National Alliance for Caregiving: “Caregiving in the US 2025: Caring Across States”
[…]In 2025, 63 million American adults—one in every four adults—provided ongoing care to adults and children with disabilities or complex medical conditions. Whereas the national report focused on the 59 million family caregivers of adults, this state-level resource includes data on an additional 4 million family caregivers: those who care for children under age 18 with disabilities or complex medical conditions.
Family caregivers play a crucial role in supporting family, friends, and neighbors. They provide a range of essential services that help their care recipients conduct their daily lives and, often, to remain at home in their communities. Most of these caregivers are unpaid for their care, and many experience significant negative financial impacts. Yet more than half (51 percent) feel a sense of purpose in their caregiving role. Their efforts help fill the gaps in our nation’s long-term services and supports (LTSS) system, and they are essential to the sustainability of health care in America.
[…]Family caregivers perform a range of tasks that vary in complexity, physical demands, and time commitment. Understanding the scope and intensity of family caregiving is key to understanding the lives of caregivers. […]The number of hours of care is a key factor in the Level of Care Index. Nationally, 28 percent of family caregivers of children and adults provide 40 or more hours of care per week or constant care.
[…]The number of family caregivers nationally has increased by 20 million since 2015. Although more than half get a sense of meaning or purpose from their caregiving role, they also encounter negative financial impacts, a lack of training and support, and feelings of stress and isolation. Most are providing care without compensation, care with an economic value estimated at $600 billion.[…]
• From WENY News: “Lawmakers and advocates push for more support for New Yorkers with disabilities”
Whether they’re in a care facility or living at home, taking care of a person with intellectual and developmental disabilities (IDD) can be expensive. On Tuesday, local lawmakers met with advocates, caregivers, and those being cared for at a luncheon at the Radisson in Corning, [New York].
[…]“We need to make sure, as a state, that we take care of those folks throughout their entire lifespan, and take care of the parents and family members that are taking care of their loved ones,” said New York Assemblyman Joe Sempolinski.
Assemblyman Sempolinski is affected personally; he has a daughter with Down Syndrome. He and other parents with disabled children said state funding can make all the difference in their child’s life.
[…]Advocates are asking for a 2.7% increase in wages for direct support professionals. Last year, they asked for a 7.8% wage increase, but that did not make it into the final budget. Local lawmakers said they hope the 2.7% ask this year will make it across the finish line.
Advocates are also asking for improved working benefits, including child care, as well as more of an emphasis on the industry’s infrastructure. They said they hope lawmakers can reach across the aisle to get this done.
[…]Assemblyman Sempolinski […] said this type of support is one of his highest priorities.
“You’ll see very conservative republicans like myself, you’ll see liberal democrats. This is something where there’s a broad agreement that it should be a very high priority for the State of New York to take care of those folks who, through no fault of their own, need a little extra help in the IDD community.” […]
• From Disability Scoop: “Government Shutdown Has Disability Providers ‘Running On Fumes’”
Nearly a month into the federal shutdown, some organizations aiding people with disabilities are starting to scale back services as the effects begin to mount.
[…]Social Security and Supplemental Security Income payments and funding for Medicaid home and community-based services have continued, but other operations including civil rights investigations at the U.S. Department of Education are at a standstill. Military families have reportedly seen coverage of applied behavior analysis therapy for their children with autism halted and at least one state-run job training program for people with disabilities — the Tennessee Rehabilitation Center-Smyrna — closed its doors as a result of the shutdown.
Now, protection and advocacy organizations — which exist in each state to provide free legal and advocacy services to individuals with disabilities — are feeling the pinch.
In what may be the most extreme example, Disability Rights Arkansas said last week that it would stop taking new cases and the organization plans to furlough staff beginning Nov. 1 citing “unprecedented funding challenges” stemming from the shutdown.
[…]There’s also growing concern about what’s to come, said Maria Town, president and CEO of the American Association of People with Disabilities. Federal funding for the Supplemental Nutrition Assistance Program, which provides food aid and is disproportionately relied on by people with disabilities, is set to run out by the end of the month and new Section 8 housing vouchers will not be issued after November if a deal isn’t reached, she said.
“Given how many people with disabilities rely on benefits from government programs, this shutdown is especially harmful for the disability community,” Town said.[…]
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