President Biden calls for deeper investments in caregiving and special education
Plus: Former principal turned medical mama stunned at the difficulty in accessing services and Ireland grapples with new plan to assess student needs during 'crisis'
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Disability Scoop: “Biden Calls For Investment In Disability Services”
President Joe Biden is renewing his push to improve support for people with disabilities living in the community.
Biden used his State of the Union address late last week to urge Congress to add funding for Medicaid home and community-based services. […]
The president followed up on Monday by including $150 billion over 10 years “to strengthen and expand Medicaid home and community-based services” in his budget request for the 2025 fiscal year, which begins in October.
This is not the first time Biden has used his bully pulpit to take up the issue of caregiving. Biden originally proposed $400 billion in spending to expand access to Medicaid home and community-based services in 2021, but the plan never came through. However, a pandemic relief bill has provided about $37 billion extra for the program since that time. […]
Beyond requesting more investment in home and community-based services, Biden’s budget includes a $200 million increase in spending on special education services, $10 million more to train special educators and early intervention providers as well as funding to improve customer service at the Social Security Administration.
The budget request is largely viewed as a wish list highlighting the president’s priorities. It will now be up to Congress to determine what will ultimately be included in the federal budget for the upcoming year.
• From YES! Magazine: “A Day in the Life of Parents Caring for a Child With Complex Medical Needs”
It’s still dark when Claire Hernandez has her first meal of the day. In fact, the 3-year-old is often still sleeping. Her father, John Hernandez, tiptoes into her nursery and, gently, so as not to wake her, attaches a feeding tube to her stomach. The vitamins and medications that flow through the tube help Claire, who has a rare genetic condition, survive. So does the love and dedication of her parents. Without their commitment and round-the-clock care, Claire would live in a hospital or institution, or possibly, tragically, not be here at all.
As her parents see it, caring for Claire is part of the job of being parents and something they do gladly, just as they care for her older brother, 7-year-old Xavier. Claire was born, apparently healthy, in December 2021 in Los Angeles, where the family still lives. Her parents never anticipated that four months later, after having brain swelling and open-heart surgery, their infant would be diagnosed with a condition so rare that only 20 people have been known to have it. Or that it would mean Claire’s mother, Vivian Vasquez, would become Claire’s full-time caregiver, and lose her job as a high school principal in the process, that the family would burn through their savings and need public assistance for health care, that they’d have to battle endless insurance program denials and paperwork to get care that doctors said Claire needed. Perhaps most shocking was that the health and social support system that’s supposed to help families like Claire’s would, instead, make it even more stressful to care for a child with intensive medical needs.
“When you are trying to care for a human baby and all you find are walls … it’s this stone-cold feeling,” Vasquez says. “How do I find the help I need? There’s no one to direct you.”
If Vasquez, who holds two master’s degrees, has struggled to figure out how to get health coverage and care for Claire, what happens to other, less-resourced families? California has multiple programs that provide support to children with complex medical needs and disabilities. […] But accessing and making use of these programs is a minefield for many families. They often receive little guidance on how to apply for programs, must navigate complex paperwork and bureaucratic requirements, wait weeks or months to find out if they’re approved for a service, and—then, even if they do qualify—struggle to find providers that can offer the sanctioned care. The result is that children often don’t receive the care they need—which can lead to a need for even more care as they get older and increases the risk of the child requiring expensive visits to hospital emergency rooms. Some parents give up on trying to get services altogether and become emotionally or financially distressed. It’s common for at least one parent to have to stay home to care for the child, affecting the family’s income. […]
• From The Irish Times (Ireland): “Plan to oblige teachers to assess disabled children’s needs will ‘overwhelm’ schools”
A row is looming between schools and the Department of Education over unpublished plans to oblige principals and teachers to play a key role in completing education assessments for vulnerable students.
Earlier this year the High Court struck down an assessment of needs process – which is used to identify the kind of services disabled children need to meet their full potential – and found it did not meet requirements under the Disability Act.
The department is understood to be finalising a revised reporting process for all schools which, officials estimate, could take 20-60 minutes to complete per child.
However, the plans have sparked anger among school management bodies who say the new process threatens to “overwhelm” schools and take away “precious contact time” for disabled children.
[…]“the unrelenting pace of change in special education policy in the past few years, combined with the exponential increase in needs in schools, and consequential workload, means that many schools are already at crisis point.”
[…]Group representing children with disabilities and their families, meanwhile, have expressed anger that they were not consulted over the plans. […]
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