Caregivers Wanted: Parents or Felons Need Not Apply
Plus: Nebraska adds waiver for I/DD children, Chicago urged to continue ADA upgrades to schools, and the New York Times examines Indiana's paid family caregiver program meltdown
On the second Sunday of every month, we feature Where is the Manual for This?!, an editorial cartoon about the medical mom life from Lenore Eklund.
Lenore’s cartoon resonates with me as an Oregon mom of disabled children. Of course, there are a patchwork of in-home caregiver programs across the country so it’s hard to categorize all of Medicaid services in a single cartoon. A few states do let parents in, some states (like mine) only let parents have these jobs after the child turns 18, others have training requirements. But by and large, American parents of high needs children don’t have the option to be paid for their caregiving, despite these being entry-level jobs for nearly everyone else.
For those following the paid parent caregiver fight in the Oregon legislature, today (March 10) is the last day of the short session and despite overwhelming support from its policy committee, S.B. 1565 did not get a vote. The program that was passed last session for paid parent caregivers in the state will start out extremely limited, providing about 155 spots for the approximately 1,400 highest-needs children in the state who would be eligible. More information about it can be found on this state website.
In other news, did you watch the State of the Union address this week? President Biden gave a nod to the paid family caregiver issue! His administration seems to mostly view this issue through the lens of senior care. Less understood is the unexpected realities that many parents and guardians of young children face.
While he fumbled a bit, Biden seemed to make an even stronger statement than his prepared speech. He was supposed to say: “Imagine a future with home care and elder care so seniors and people living with disabilities can stay in their homes and family caregivers can get paid what they deserve!"
He ended up saying: “Imagine a future of home care and elder care and peoples living with disabilities so they can stay in their homes and family caregivers can finally get the pay they deserve!"
I like the “finally” that he added. I hope we can one day “finally” stop this fight too. In a single policy change, America could fulfill its failed promises of home and community based services and fund these family-centered jobs.
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From KETV (Nebraska): “Nebraska Department of Health and Human Services offers new waiver for developmental disabled children”
A "game changer" and "transformative" — that's the way state officials and advocates for children with developmental disabilities describe a new Medicaid waiver.
Beginning this week, the Nebraska Department of Health and Human Services will start notifying 850 families currently on the Developmental Disabilities waitlist they are eligible for the new Family Support Waiver.
It helps children with intellectual or developmental disabilities live at home.
"This announcement is huge for Nebraska," said DHHS's Director of the Division of Developmental Disabilities Tony Green.
It will allow the child to access Medicaid and also provide the family up to $10,000 a year for other expenses.
"This waiver will provide children from birth to 21 an opportunity to get in-home services while they are still living in their family home waiting to get some of those larger waivers," Green said.
"I am just ecstatic," said Edison McDonald, the executive director of the ARC of Nebraska. "That could help with all sorts of expenses from adaptive technology to child day habilitation of services. It also is going to mean that they're going to have access to physical therapy, occupational therapy, speech therapy."
[…]The program is made possible through a bill passed last year sponsored by state Sen. Machaela Cavanaugh.
It called for $2 million a year in state funds. That allows the DHHS to access another $10 million in federal funds and $6 million in federal ARPA funds.
"With little actions now, we can create tremendous cost savings down the line that can add up to over $100,000 of savings per kid," McDonald said. […]
Both Green and advocates say it's not as much coverage as the full DD waiver but it gets help to many families earlier.
"This is probably the largest transformation that our disability system has seen since about 1990," McDonald said.
• From the New York Times: “Paid Family Caregivers in Indiana Face Steep Cutbacks”
Kacey Poynter doesn’t have to commute far to clock in for work. She’s a paid caregiver and simply rolls out of bed to tend to her charge: her 2-year-old son, who sleeps in a portable playpen right beside her.
Sonny was born with a congenital malformation that impaired his brain development and needs near continuous care simply to breathe and eat. Ms. Poynter left her job at a call center when she brought him home from the hospital and has nursed him ever since rather than relying on aides or institutions. Indiana’s Medicaid program has paid her for this labor of love.
“It’s just been honestly life-changing, being able to be here with him and not worry about someone else trying to take care of him,” she said.
But her ability to keep looking after him is now in doubt. Indiana’s social services agency has announced plans to end the caregiver program, citing a nearly $1 billion shortfall in the state Medicaid budget. By July 1, parents and guardians caring for children and spouses caring for their partners would have to enroll in a different program for far less pay.
[…]Indiana’s lieutenant governor, Suzanne Crouch, a Republican who is running for governor, has called on the social services agency to postpone the cuts and demanded an outside audit of the agency’s finances. “We’re going to be judged by how we care about the most vulnerable among us,” she said in a statement.
About four million Americans with chronic illnesses or disabilities receive home and community-based services paid for by Medicaid, the government’s health insurance program for lower-income people. Most are adults, but a growing share are children with serious medical conditions who may require both skilled services and help with daily living tasks like bathing and dressing.
[…]Kate McEvoy, executive director of the National Association of Medicaid Directors, said that the paid programs offered a way to meet family needs and to save states money that might otherwise be spent on expensive institutional care. “They want to be served in a home setting or in the community, and generally it is less costly for the Medicaid program,” she said.
[…]Indiana didn’t flag the growing spending until the end of last year, when an updated forecast for Medicaid showed it was $984 million in the hole. Michele Holtkamp, an agency spokeswoman, said that the caregiving program was only one of several factors for the shortfall, “but it was the most acute.” […]
• From Chicago Sun-Times (Editorial Board): “Chicago schools must stay on pace to help special education students”
Chicago Public Schools [CPS] isn't unique in lagging behind on updating infrastructure to accommodate students with disabilities.
Two-thirds of U.S. public school districts have steep ramps, doorway-related obstacles and other physical barriers that make it hard for disabled children (and adult staff) to get around, according to a 2020 report from the U.S. Government Accountability Office.
The majority of the schools analyzed for the study — 70% — cited lack of funding as the reason for falling behind and had large-scale renovations, small-scale upgrades or accessibility evaluations planned by 2023.
[…]A small group of parents, some accompanied by their children, descended outside CPS' Loop headquarters Monday to express dissatisfaction over how the district handles it special education program. Not only did they highlight the need to retrofit buildings, the group demanded special education programs in neighborhood schools and additional translation services for non-English-speaking parents of special needs students, the Sun-Times' David Struett reported.
What these parents have to say is crucial. The district's deficiencies have the greatest impact on children with the greatest needs. School is challenging enough without having to worry about how hard it may be to twist a doorknob or maneuver from class to class.
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