Mike Volkman is 54 years old and in good health, and the reason for that, he says, is because he is in charge of making sure he’s well taken care of.
Since 1997, he has used Consumer Directed Personal Assistance (CDPA), a long term care service that puts people in charge of managing their own care at home and in the community. Mike, who uses a wheelchair and needs a ventilator to breathe, relies on his team of Medicaid-funded personal assistants for independence, dignity and survival.
CDPA gives freedom and choice to Mike and nearly 100,000 others who need long-term care to thrive. But that might not be the case for much longer, thanks to significant changes to the program undertaken by the state in the interest of cutting costs.
“If I lose my CDPA service, I will lose my home of the last 30 years and I won’t ever be able to get it back,” says Mike, referring to the long waiting list for his current Albany apartment building. “I need 24/7 service one-on-one with undivided attention. My health, my safety, my very life is in jeopardy – along with my freedom and independence.”
Under CDPA, Mike is the boss of his own business, so to speak – a business solely focused on keeping him alive and thriving in the manner in which he has chosen to live. He has the final word as to how he receives care – even if it’s considered unorthodox per traditional medical care models. When he used traditional home care, Mike said, he he found that the aides’ state-mandated training often conflicted with his needs and desires.
CDPA consumers can hire relatives, friends or other people of their choice to work for them as personal assistants. They work with a third party agency called a fiscal intermediary (FI), which acts as a payroll and human resources department to ensure accuracy in billing Medicaid, processing taxes and insurances, and helping consumers succeed in self-direction.
Losing CDPA would mean that Mike would almost certainly wind up back in a nursing home. During a previous stay at a long-term rehab facility, he was stuck in bed for 45 days straight because staff members were not permitted to transfer him from his bed to his wheelchair using the method he requires.
Mike, a hardliner disability rights advocate, pushed to be released and eventually returned home. “I would probably still be there today if I didn’t fight immediately on day one,” he said. “They never expected me to get out of there. Nobody does.”
On September 1, the Department of Health (DOH) began moving forward with what it calls long-overdue efficiencies to its Medicaid long term care program. Specifically, the state aims to save $75 million through adjustments – in other words, “funding cuts” – to reimbursements to FIs. These new rates were published in a July 1 policy document which, interestingly, also included detailed instructions on how FIs should handle closures.
In response to the cuts, a coalition of three associations and twelve individual FIs filed an Article 78 lawsuit against DOH. The complaint states that DOH violated the state Constitution due to a lack of transparency, and alleges further that DOH’s new rates are arbitrary & capricious – designed to work backwards toward a specific budget cut and force FIs out of business.
Arguments were heard in Albany County Supreme Court by Judge Christina Ryba on September 17. On the day of the hearing, the courtroom was packed with consumers – including Mike.
Judge Ryba’s decision is expected in the next couple of weeks.
In the meantime, concerned New Yorkers are already feeling the effects of DOH’s cuts. Many are wondering why, when there is already a serious workforce shortage in home care, the state is pursuing this strategy. In many areas, there simply are not enough people to cover home care hours. CDPA is the stitch that holds the system together.
“While not a cure-all for the current workforce crisis in home care, and also not exempt from it, CDPA has served as the safety net that has allowed the long-term care system to remain functional,” said Bryan O’Malley of the Consumer Directed Personal Assistance Association of New York State, one of the plaintiffs in the suit against DOH.
“By allowing those in need of services to hire friends and family to serve as their home care workers and shifting the obligation to hire to the recipient, those in need of services have been able to lessen the impact of the crisis…or at least mask its larger impact to policymakers.”
Personal assistants throughout New York have already started to see decreases in their already low wages, benefits, and ability to earn more money by working overtime. This means many consumers will be back to square one, forced to recruit new PAs off Craigslist and Facebook – a difficult task made complicated by the minimum wage salary offering.
As a reference point, starting pay at Stewart’s ranges from $13 to $15.00/hour – plus benefits – for full time employees.
In an FAQ on their website, DOH states in response to “Will my personal care assistant’s wages be affected?”: “No. Wages or wage–related requirements for personal care assistants, including State law requirements related to minimum wage, are unchanged.”
Alissa Williams, a Nassau CDPA consumer, is struggling to hire assistance in the wake of the cuts. Her FI, AccuCare Home Health Services, has been forced to lower wages and eliminate benefits and overtime as a result of the State’s cuts.
“My personal assistants’ pay was recently cut down to minimum wage, and they can no longer work overtime,” she said. “I live in the country. It is challenging to hire new staff because of this and live the quality of life I have chosen for myself. Why does Governor Cuomo allow this to continue?”
Angelique Guillory of Buffalo, a mother of three who works as caregiver for her own mom, has also been impacted.
Last week, she received a letter from her mother’s FI informing her that due to funding cuts, her pay will drop from $14 to $11.10 an hour. Before CDPA, Angelique cooked late nights at a chain restaurant, took care of her mother without pay, and had almost no time to spend with her children. At $14 an hour, she could afford to live. Now, given the pay cuts, she says she’ll have to return to her old job in the restaurant industry to make ends meet.
“I think it’s horrible,” she said. “The United States was built on the backs of the elderly – of our ancestors. And what about the people who don’t have family? They will have no one to take care of them.”