Nursing home residents and advocates urge New Jersey to raise long-stagnant $50 personal needs allowance

Lawmakers unanimously advanced a bill that would raise the monthly personal needs allowance for Medicaid residents to $140.

For 30 years, Luis Rivera had a successful career working for the Musicland Group, managing stores like Sam Goody. Now, he lives in a nursing home in Brick Township, struggling to afford clothes, toiletries, and a haircut.

That’s because New Jersey only allows nursing home residents on Medicaid to keep $50 a month from the Social Security benefits and pensions they worked their whole lives to earn. The rest goes toward the cost of their nursing home care.

“Most nursing homes don’t provide clothing, coats, shoes, socks, undergarments, private landlines, free Wi-Fi, envelopes, stamps, tablets, or computers, Rivera said. “The toiletries nursing homes provide are low quality. Soap dries out our skin. Shampoo and lotion can cause rashes.”

Rivera said raising the allowance would restore dignity, independence, and quality of life for nursing home residents.

“The $50 we receive monthly isn’t enough for us to be ourselves and maintain our identities,’ he said.

Rivera was among several nursing home residents who urged lawmakers Thursday, May 7, to approve legislation that would raise New Jersey’s monthly personal needs allowance from $50 to $140 for nursing home residents on Medicaid, who make up about two-thirds of nursing home residents in the state.

The bill, Assembly Bill 2691, would also automatically increase the allowance annually based on Social Security cost-of-living adjustments.

The allowance is the only source of discretionary money available to long-term care residents enrolled in Medicaid. Residents must contribute nearly all of their income toward the cost of their care while retaining only a small monthly amount for personal expenses such as toiletries, clothing, haircuts, snacks, books, hobbies, phone service, or outings.

Supporters of the legislation argued the current allowance has become woefully inadequate in one of the country’s most expensive states. Thirty-two states and Washington, D.C. provide a higher allowance than New Jersey’s current $50 monthly amount.

“There are approximately 28,000 residents living in nursing homes on Medicaid at the moment,” nursing home resident Stacey Moore said in testimony submitted to the committee. “They receive $50 a month to pay for what they need for the entire month.”

Moore who has lived in long-term care since suffering a spinal cord injury in 2007, heads New Jersey Nursing Home Residents United. She helped draft the legislation after years of advocacy for residents living in long-term care facilities.

“Living in the fifth most expensive state in the nation, our PNA does not even cover a cup of coffee each day,” she said.

Moore said many residents are forced to rely on family members for basic necessities.

“I do not believe residents should have to ask family members for help. Families are already struggling with gas prices, food prices, mortgages, tuition, and other rising costs,” Moore said. “We are asking for veterans, senior citizens, and people with disabilities to receive an allowance that reflects the actual cost of living, no more and no less,” Moore said.

Another witness, Sylvia Ellis, testified about caring for her mother-in-law, who has dementia and has lived in a nursing home for more than a decade.

Ellis said she visits the facility daily and personally purchases many necessities because the nursing home does not adequately provide them.

“They provide the bed and the food, but I do everything else,” Ellis said. “I provide her with everything — toiletries, personal items, everything.”

Ellis said she is now in her 70s and struggling physically to continue making daily trips to the nursing home.

“I’ve already had one knee surgery and now need another one,” Ellis said. “It’s getting difficult for me to go there every day, every day, every day.”

“This will help not only my family but many other families continue caring for loved ones,” she added.

The legislation was advanced Thursday by the Assembly Aging and Human Services Committee with amendments.

The amendments added SSI recipients residing in specialized hospitals and clarified the definition of “special hospital.”

Under the bill, residents receiving Supplemental Security Income would also see their allowances increase to $140 a month through larger state supplemental payments. Currently, the federal government provides SSI recipients with up to $30 a month for personal expenses, while New Jersey supplements that amount to reach the existing $50 allowance.

Absent changes to the federal allowance, the state would be responsible for a $90 monthly supplemental payment for each eligible SSI recipient covered by the bill.

The bill does not include a formal fiscal estimate, but the increase would likely shift additional costs to Medicaid because residents would retain more of their income instead of contributing it toward facility costs.

Lawmakers on the committee were united in their support of the bill, unanimously voting to release it from committee and pledging to push it forward. A similar bill advanced through Assembly and Senate committees last year but ultimately stalled.

Committee Chair Assemblywoman Shanique Speight said during the hearing that she had recently visited nursing homes and heard concerns directly from residents.

“We’re going to help push this bill,” Speight said. “Hopefully, we can get this through the finish line so that our residents here in this state can live with dignity.”

Assemblywoman Dawn Fantasia said it boggles her mind that the bill was not approved last year despite bipartisan support.

“We don’t always agree on things on both sides of the aisle, but for something like this, how do we not move this?” Fantasia said. “Sometimes we spend money on the stupidest things … vanity projects … How is this coming before us again? This has got to move.”