Idaho's paid parent program to shut down by the end of the month
Plus: DOJ says Alabama is failing to provide home services; New Jersey investigation shows insufficient options for disabled kids
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 Associated Press: “Justice Department says Alabama institutionalizes too many children with disabilities”
Alabama children with physical disabilities are being unnecessarily institutionalized in nursing homes, the U.S. Justice Department said Thursday, warning it would file suit against the state unless changes are made to allow more of these children to live at home.
A Justice Department investigation found Alabama is violating the requirement of the Americans with Disabilities Act to administer services to individuals with disabilities in the setting most appropriate to the person’s needs.
“Many children with physical disabilities in Alabama are unnecessarily institutionalized or are at serious risk of unnecessary institutionalization,” Assistant U.S. Attorney General Kristen Clarke wrote to state officials.
[…]Federal officials said the state has not adequately developed its community-based workforce. The Justice Department also said Alabama fails to support foster parents who care for, or are considering caring for, children with physical disabilities.
Alabama parents too often face a difficult choice of sending their children to nursing homes for life or quitting their jobs to become full-time caregivers, the Justice Department wrote. […]
• From NorthJersey.com: “Emergency housing for NJ kids with disabilities is so scarce 'families often just give up'“
Freehold’s Lisa Fitton said she faced terror every day for years.
She hid in her car, behind neighbors' vehicles and in closets. Caring for her son, Andrew — whose severe autism led to violent outbursts — was almost impossibly hard for Fitton, who was on her own.
“I got to the point that I was afraid of my son," she recounted in an interview. "When he would go after me, I would run out of the house. It was impossible to do it alone and I just couldn't get the help I needed."
New Jersey's Children's System of Care is supposed to offer a lifeline in such extreme cases. The program is tasked with providing emergency housing and treatment for children with severe disabilities whose behavior can pose a danger to loved ones — or themselves.
But families and disability advocates say the system is woefully underfunded, sometimes taking months or years to offer help to parents in crisis. And a labor shortage facing health care providers of all types since the COVID-19 pandemic means temporary housing is even scarcer than before.
While an estimated 13,000 children and teens with disabilities take part in various CSOC programs, the state has just 353 emergency beds set aside for the population across New Jersey. Staffing shortages mean there are currently only 187 slots actually available, the state acknowledges.
[…]With a more than $800 million budget, the Children's System of Care is charged with providing behavioral health care for tens of thousands of young New Jerseyans with emotional and mental health needs, substance use challenges and intellectual or developmental disabilities.
[…]"It is the single most painful decision you will ever make, and you'll never get over it," said Parles. "You do everything you can to not ask for that help because the system, and particularly the Children's System of Care, makes you feel like a failure because the goal is that you raise your children."
[…]Feelings of helplessness and constant worry can affect the entire family, siblings feel neglected and marital conflicts can escalate. Aggressive behavior can put other family members at risk, which adds to the trauma and exhaustion. Economic strains to afford medical costs increase the pressure.[…]
• From the Idaho Capital Sun: “‘That impossible juggle:’ How Idaho parents of disabled kids are bracing for care program’s end”
For her 14-year-old son’s whole life, Jessica Jackman’s main job has been caring for him.
That has meant constantly being by him to avoid falls, giving him seizure medication three-times daily to manage epilepsy, and carefully monitoring his food to avoid life-threatening risks of aspiration pneumonia.
For a few years, she’s been her son’s official paid caregiver through a new program that lets Idaho pay parents and spouses, instead of professional caregivers.
That program could end this month, as Idaho health officials say fraud and abuse have contributed to higher-than-expected program costs.
But Jackman and some disability advocates worry Idaho’s scarce direct care workforce — in relatively low-paid, demanding jobs that often require helping with day-to-day tasks like bathing — can’t meet kids’ needs.
“You’re opening up a lot of children and spouses to a higher incidence of hospitalization because people don’t understand the unique care that needs to happen for each person,” Jackman told the Idaho Capital Sun in an interview. “It can be a matter of life and death — and that’s not an exaggeration in our situation.”
[…]If the federal Centers for Medicare and Medicaid Services approves, Idaho’s program could end Jan. 31. But the Idaho Department of Health and Welfare, in a letter sent Friday to providers, said Idaho didn’t yet have federal approval to end the program then and anticipated it didn’t have enough time to prepare for automatically changing authorizations on Feb. 1.
Spouses or parents can remain as direct care workers, the agency wrote in the letter, which the Sun obtained. But the letter asked stakeholders to encourage program participants with parent or spouse caregivers to “begin looking for alternative caregivers” and said the agency would notify providers when arrangements must be made.
Moves by the Idaho Legislature to reinstate the program aren’t expected until 2026 as officials work on safeguards, said Idaho Senate Health and Welfare Committee Chairwoman Juile VanOrden, R-Pingree.
[…]Even with the recently reported 10% growth in Idaho’s direct care workforce, the disability advocates wrote it’s unclear if there will be enough providers to serve children.
After submitting that public comment on Dec. 4, Disability Rights Idaho Executive Director Amy Cunningham told the Sun the organization heard from a parent who couldn’t find a direct care worker for their child after contacting 50 agencies.
The organization, Cunningham said, “is at a loss for understanding how Idaho Medicaid meets its obligations to Medicaid eligible children.”[…]
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As Idaho's program prepares to shut down, Florida's paid relative caregiver program is about to begin. I received a letter in the mail this past week which explained who was eligible to be paid and the necessary training and employment the relative caregiver would have to go through. It would be CNA training and CNA pay.
Let me say, that IN MANY WAYS, THIS IS A WIN FOR FAMILIES AND I AM HAPPY FOR MY FELLOW SPECIAL NEEDS CAREGIVERS. I know this paid family caregiver program is a life-saver for many, but FOR MY SITUATION, it's not.
In Florida, if a child has certain medical equipment in their body, specifically any type of feeding tube, (G, J, GJ, NG, NJ,) or a tracheostomy (trach), the only employed staff who can provide home nursing care through an agency MUST BE AN LPN or HIGHER CERTIFIED NURSE.
My daughter qualifies for a nurse. Also, my body and mind have taken a brutal beating from the years of unsupported caregiving done before my daughter qualified for home health nursing. Now, that I have nursing help, I want my daughter to get as many nursing hours she qualifies for from the Centers for Medicare and Medicaid. I need time to recover, heal, get some major self-care done, and see my own physicians who I haven't seen in the last 3 years. I kinda feel like if I was to perform as a paid family caregiver for a certain number of hours per week, then the number of agency nursing hours my child gets approved for may be decreased. I also wonder if I would be allowed to participate in the program because as an employee, I WOULD BE CREDENTIALED AS A CNA, NOT AN LPN OR HIGHER. Does this program make an exception to that rule?
We, as caregiver parents and relatives are already misunderstood and overlooked when it comes to understanding HOW INVOLVED CAREGIVING IS in the public eye. So, we work a shift and then we are off the clock, but providing the same care until the next "shift" and not getting a break in between?! Hearing the phrase, "Well, you do it anyway, you might as well get paid for it," just minimizes the depth of attention required, and the physical and emotional stamina required when caring for your child with disabilities around the clock.
The biggest positive thing from this is the program provides some income for the family members who probably had to give up their careers to fulfill the primary caregiver roles. I would rather the funds from the paid caregiver program be used to pay home health nurses BETTER WAGES and OFFER THEM GOOD BENEFITS, so home health becomes a more attractive nursing field and attracts better qualified nurses. Use the funds to create an incentive program to attract nurses to home health. Home health is the lowest paying nursing field in the nursing sector.
As for me, I will ALWAYS BE MY GIRL'S CAREGIVER--paid by an agency or not. However, I would like to rejoin the workforce for what I went to school for and becoming a CNA was not it. I need all CNAs, LPNs, and RNs, please report for duty at your nearest home health agency. There's lots of moms and dad's who DESPERATELY need you to help their kids remain in their own homes. NURSES, YOU HAVE ALWAYS BEEN OUR HEROS.
Best Regards to ALL of my Fellow Warrior Parents and Caregivers,
Denie and Princess M (T9P, T9M, Dandy-Walker Syndrome) 💜🦋✝️🙏