Pennsylvanians living with physical disabilities say one of their top priorities is choice.
This includes choosing the home care agency or helper to help them with things like getting up and getting dressed. It also includes the option to choose another home agency or caregiver if they are unsatisfied.
But now they fear that a proposal by the state to give them more choice will actually give them less. They fear that this could also lead to problems, e.g. B. that they have to rely on a foreign company to provide a replacement when their regular caregiver cancels sick.
“Do I have to wait for someone to drive 12 hours from Vermont or Massachusetts to get me out of bed?” says Kelly Barrett, who uses a wheelchair.
Ed Pahula, who uses a wheelchair and works for people with disabilities, says: “They prefer to speak to someone in their own area code and they don’t trust outsiders. So it is very important to have local support.”
Approximately 115,000 Pennsylvanians with disabilities may be affected by the proposed change.
Most Pennsylvanians with physical disabilities are covered by Medicaid, which pays for home caregivers.
Pennsylvania has three Medicaid managed care organizations that receive government funding to pay for caregivers. The organizations, in turn, enter into contracts with home care facilities that employ the nurses. This is how more than 80% of Pennsylvanians with disabilities receive home care.
But Pennsylvania also offers a “consumer-centric” option. This allows people with disabilities to hire and manage their own caregiver. Often they hire a family member or someone they know. The caregiver is paid by the state, which contracts with a provider to perform administrative duties and payroll for people employed under the consumer-based option.
Many Pennsylvanians with disabilities say that while the two options aren’t perfect, they offer a great deal of choice when it comes to using an agency or hiring someone yourself. Most importantly, it allows them to move to another agency or caregiver if they are dissatisfied.
But now the Pennsylvania Department of Human Services is proposing a third option that it says combines the best aspects of the agency and the consumer-centric options.
According to Brandon Cwalina, a spokesman for human resources, as an “agency with choices,” it is “just another option” for people with disabilities.
He says the department’s goal is to “continue to support direct care staff and participants by offering an option where participants select and manage a direct care worker and still have the freedom from back-end administration and payroll functions.” can benefit from an agency”.
What is the problem?
The state plans to hire a company to offer this option, with the company employing some caregivers directly. The state also conducts a study to determine an appropriate salary level and pays for nurses’ services – something that nurses working under the existing consumer-based option lack.
And that’s where assorted potential problems arise, according to Pennsylvania Disabled Advocates who recently gathered in Harrisburg.
For one, they argue that the proposed option duplicates what is already available.
Worse, they say the hired agency is becoming a “preferred provider” with many local caregivers flocking to the better pay and benefits it would offer.
The end result, they say, is an uneven playing field that will put some agencies out of business – and thereby reduce their overall choices.
“With ‘Agency with Choice’ there is no choice. That’s really clear,” says Pahula, who lives in southwestern Pennsylvania. He says there is “no support” for the proposal among Southwestern consumers and agencies.
Pahula, who has worked on the issue of home care for 25 years, also argues that the proposal risks repeating past mistakes.
“We cannot rewrite the same story over and over again. A provider does not work. A bundle of providers does not work. History has proven this. It turned out that we need a small number of providers in each region,” he says.
Even so, numerous consumers and advocates stressed that they like a few things about the state’s proposal, including the plan to pay for caregiver benefits.
But they say the state should use the money it plans to spend on the third option to pay benefits and better wages for caregivers working under the existing options.
They further claim that the state is rushing ahead with insufficient input from the people affected. They spent one final day in the Capitol, visiting lawmakers and asking them to slow down what they say is rushed to be in place by the end of Gov. Tom Wolf’s final term in January 2023. The state plans to have the proposal operational by early next year.
Cwalina, spokesman for the state Department of Human Services, says consumers and advocates will have another formal opportunity to input this fall.
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