Family frustrated after near-miss on losing care hours

Family frustrated after near-miss on losing care hours

Alli Smith plays cards with her sons, from left, twins Brennan and Brody and their brother Landon. Smith and her husband say they were unnerved by an attempt to cut in-home nursing care hours for Brennan and Brody. (Breeze photo by Charles Lawrence)

PAWTUCKET – Alli Smith says an attempt last month to cut nursing hours for her severely disabled identical twin 10-year-old sons, Brennan and Brody, was “an obvious, glaring attempt” to save money.

The fact that she was offered an alternative of one nurse caregiver for her two boys instead of cutting the hours for in-home skilled nursing care shows that this is about money and not quality of service, said Smith.

“The standard of care has always been one to one,” she said of the care through Bayada Home Health Care.

And though her issue ended up being resolved at least temporarily late last month, with full nursing service restored, Smith said she received no guarantees for next year and she worries that other people experiencing similar cutbacks won’t know how to respond as she did and won’t have her “big mouth” in advocating for her family.

“It’s not unique to my family,” she said. “Other families out there are experiencing this.”

She said she asked for assurances that she won’t experience another abrupt announcement of cuts in services, and was told simply that it won’t happen in January because everyone is very aware of the family’s situation.

Smith said she recently read a story in The North Providence Breeze about in-home nursing services being cut for young people transitioning to adulthood, and she believes this is all part of a broader effort at saving money that’s hurting those in need of the care.

The Smiths, of Clews Street in Pawtucket, learned on Nov. 23 that their full schedule of care would be restored through the Executive Office of Health and Human Services UnitedHealth Community Plan, the managed care program from Medicaid.

The twins are 5th-graders who attend Meeting Street School on a reduced schedule of three hours per day, four days per week, paid for by the Pawtucket School Department. They can’t attend regular school hours due to extreme fatigue, said their mom. They were born prematurely, spent their first few months in the NICU, “and have faced more challenges in their short time than most of us do in a lifetime.”

When they were 2 years old, they were diagnosed with a chromosomal deletion that manifests as neurodegenerative disease. They have intractable epilepsy, which is epilepsy that does not respond well to pharmaceutical intervention. Autonomic dysfunction prevents them from regulating their own body temperatures. They are developmentally and cognitively delayed, rely on feeding tubes 20 hours per day for nutrition, and require complete and constant supervision and assistance, she said.

Her husband, Jason, works as a field supervisor for the U.S. Infrastructure Company. He commutes five hours daily to western Massachusetts and works hard to support the family, said Alli. Their oldest son Landon is 11 and is active in the Boy Scouts.

In June, Alli returned to work for the first time since Brennan and Brody were infants, working remotely from home around 27 hours per week. The couple has homeschooled Landon since 2016, and she is the primary caregiver responsible for the many doctor visits for the twins, therapies and coordination of care.

“I am frustrated that it seems we are being penalized because the boys are stable. Isn’t stability the goal?” she said. “Individuals who require in-home supports to stay in their home should be stable. We have been able to avoid hospitalizations because of the phenomenal care we have available to us in our home.”

The family has been receiving the care for the past six years, she said.

She said she understands a reduction of 40 hours per month per child, when each is receiving 16 hours of care per day currently might not seem like a big problem, but such a “huge disruption” has the potential to be life-altering for the family, while opening the door for further reductions in the future as authorizations are completed regularly. She would likely have to resign from her job, reducing the family’s income, she said, and that’s just one of many negative impacts from such a move.

Comments

Mrs Smith
My heart goes out to you and your children . I’ve also been put in the same boat as your family . It’s very heart wrenching to hear more family are having difficulties with the state . This is an on going problem that must be fixed. We as parents need to continue to fight never give up. We are there only advocates. No one understands unless they live in our world . Disabled children and adults have every right and us as there family to give them what they need and the state needs to realize this . We save them thousands upon thousands of dollars leaving our children home . We as there parents need to work to provide for our family’s. We must continue to fight and come together and in the end we shall prevail. I have faith you’ll get what you need for your children.