Study: Almost 90% of vent-using families lost income due to in-home care shortage
Study: Almost 90% of vent-using families lost income due to in-home care shortage
Plus: New law means big accessibility changes are coming to air travel; West Virginia lawmakers approve $183M for in-home care — short of what's needed
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From EurekAlert! (Press release from the American Association for the Advancement of Science) : “Poor access to in-home nursing for medically complex children quantified”
For American families with medically-complex children, access to home health nursing is often inadequate and the families face major financial burdens, according to research published at the [American Thoracic Society] 2024 International Conference.
This study defines medically-complex children as those who are supported by tracheostomy and mechanical ventilation, required full-time skilled nursing care.
“This study is the first to focus on the in-home nursing and caregiving environment,” said lead author Brian Jordan, MD, MCR, PhD, director of advanced mechanical ventilation and associate professor of pediatrics, Division of Neonatology, Oregon Health & Science University. “While prior studies have evaluated the home health nursing shortage from the point of view of the medical community, this study quantifies its impact as experienced and reported by medically-complex families themselves.”
Between May and July 2023, Dr. Jordan and colleagues conducted a survey of American families with medically-complex children. […]
The researchers received 242 responses from families in 34 states and the District of Columbia. Although 86.8 percent of families desired home health nursing and had home health nursing hours approved by their insurers, 47.5 percent reported fewer than half of approved hours were covered and 28.3 percent reported no in-home nursing at the time their child was discharged from the hospital. 37.9 percent reported that their child’s hospital stay was extended due solely to lack of access to available in-home nursing.
Financially, 87.8 percent of families reported having to make significant employment changes due to lack of in-home nursing, including 31.8 percent of families reporting a yearly reduction in household income of $50,000-$100,000. Families reported that these employment changes were not shared equally between parents, affecting 78.4 percent of mothers surveyed.
“Establishing a quantitative view of job and income impacts, access to non-parent caregiving support, and the percentage of approved nursing hours that are actually filled all combine to form a clearer view of the medically complex family life in the home and the trade-offs families face,” said Dr. Jordan. “We hope that bringing visibility to the reality of in-home caretaking and the hardships families endure will motivate policy makers and regional organizations to enact more supportive legislation and services to better support families with disabilities.” […]
• From Times West Virginian: “West Virginia lawmakers just sent $180 million to help seniors, kids and the disabled. It’s not nearly enough”
In Charleston this week, lawmakers spent several days bickering over the details of a funding package to help some of the state’s most vulnerable residents.
Back home in legislators’ districts across the state, real West Virginians continued to need more help and support.
People with intellectual and developmental disabilities languish in state psychiatric institutions. Seniors are forced into nursing homes, instead of living at home. Rural residents can’t find mental health or substance use disorder treatment.
Ultimately, lawmakers approved $183 million in new funding aimed at helping these and other West Virginians.
Representatives of groups that help and advocate for those who desperately need those programs were glad to see the money come through. But they also described needs for far more concentrated efforts by lawmakers and agency officials in Charleston to tackle the state’s most pressing health crises.
[…]Prior to the 2024 legislative session, West Virginia health officials asked Gov. Jim Justice for a significant and urgent increase in funding for programs like Birth to Three that help groups like victims of child abuse and people with disabilities, substance use disorders and mental illnesses.
Justice, who usually touts a tight budget, urged lawmakers to provide the agencies with most of what they asked for.
[…]But this week’s special session nearly ran aground as some lawmakers said they do not trust state officials to spend the money as intended because of how they’ve handled finances in the past.
House members tried to direct some of the money to certain programs, including restored funding for programs that help seniors and people with disabilities live at home. The Senate rejected that and adjourned, leaving the House little choice but to accept the Senate’s version of the bill or send no more funding to the Department of Human Services. […]
• From Disability Scoop: “New Law Requires Airlines To Better Assist Travelers With Disabilities”
People with disabilities are poised to see big improvements when traveling by air thanks to a host of changes tucked inside a massive reauthorization of federal aviation programs.
The measure signed by President Joe Biden this month includes new requirements for airline workers assisting wheelchair users, accessibility upgrades at airports and enforcement of rules protecting the rights of flyers with disabilities.
[…] All medium and large airports will be required to install or maintain at least one universal changing station — designed to allow caregivers to assist people of all sizes who cannot use the restroom — in every terminal and to post signage about the location of these changing stations. The law also establishes a new pilot program providing grants to airports to upgrade accessibility.
[…]Meanwhile, the legislation mandates that the secretary of transportation submit a “strategic roadmap” to Congress within a year on the feasibility of restraining wheelchairs on commercial airliners. If the idea is deemed doable, the secretary would have two years to produce a report studying the economic and financial implications of seating arrangements that could accommodate wheelchairs in flight. […]
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I definitely want to see improvement in the airline industry for how full-time wheelchair users travel. Being able to fly in your chair would definitely prevent it from getting damaged in the cargo bay.
I am very excited about the more universally accessible bathrooms in the airports. A non-profit, with multiple chapters here in the US and the UK, called Changing Spaces leads the legislative advocacy efforts to get lifts and adult size, adjustable changing tables in every public place so everyone can enjoy more outings!