As the demand for home-based care continues to rise amid a nationwide shortage of caregivers, self-direction programs are emerging as a vital solution. These programs empower individuals to choose their own caregivers, addressing unique cultural needs and fostering personal connections that enhance mental well-being and the quality of care.

While controversy continues to swirl in New York state regarding its Consumer Directed Personal Assistance Program (CDPAP), the Department of Health announced progress on the transition to a new statewide fiscal intermediary. Since the beginning of the transition on Jan. 6, approximately 115,000 consumers and as many personal assistants have either begun or completed the registration process with Public Partnerships LLC.

CDPAPs are a popular way of receiving care due to a variety of reasons with familiarity and comfort being at the forefront.

Many adults 50 and older received health-related support, encouragement and motivation from close friends over the past year, according to a recent study. Some also reported having a close friend who assisted them when they were sick or injured, picked up medications for them and attended their medical appointments.

“Self-direction programs, also known as consumer-directed programs, are typically available to Medicaid recipients. Sometimes, they are part of disability waivers and senior care waiver programs that support home-based care services,” Maria Perrin, president of Public Partnerships LLC, told Home Health Care News. “These programs primarily cover personal care services, such as meal preparation, bathing, dressing and other non-clinical health care services, enabling individuals to maintain their independence at home.”

Based in Albany, New York, Public Partnerships offers financial management, budget planning, consulting and other services to those wanting to remain in their homes and hire the caregivers they choose.

Personal assistants are compensated for their services, which they may already be providing at no charge, through Medicaid funds.

However, not everyone on Medicaid is eligible for self-direction programs. These programs are earmarked for Medicaid recipients who require personal home care to live independently, according to Perrin. Some programs have expanded services for recipients, including meal delivery, transportation to medical appointments, and even certain goods and services, such as tablets for classes or work.

Often, these caregivers come from the community, with many being family members or friends. Those hiring a caregiver should ensure that the individual has the necessary qualifications to provide adequate care.

“For instance, if you need assistance with dressing or bathing, you need someone who is physically capable of helping you. If you require transportation to appointments, make sure the person has a valid driver’s license and a car,” Perrin advised.

Participating in self-direction

In a traditional Medicaid model, the state or a managed care organization typically arranges and provides services to eligible individuals. However, in a self-directed program, the individual receiving benefits becomes more involved in decision-making and has greater flexibility in how their services are delivered.

While offering greater autonomy in receiving care, self-direction can also involve more hands-on involvement from the individual and family to begin the process which can be confusing for some.

Specific guidelines aim to ensure that beneficiaries have control over their care and planning, promoting personal choice and empowerment. Details and implementation of self-direction options may vary regionally based on the Medicaid funding authority and state-specific regulations.

Self-direction involves a person-centered planning process where the individual, with the help of family or other support systems, identifies specific needs, goals and outcomes. A budget is created based on this plan, allowing the individual to control a set amount of Medicaid-allocated funds. They can use this budget to purchase services, hire caregivers or make other necessary arrangements to meet their needs.

These programs often include contingency planning to address unexpected events or gaps in services, ensuring consistency of care.

Those opting to use self-direction programs may also opt to purchase self-direction assistance. Assistance providers offer skills training to enable families and participants to independently direct and manage self-directed services. They provide information and help in recruiting, hiring, communicating with and managing caregivers. They also help with budgeting and funding allocation management as well as training and completing timekeeping and other employer-related tasks.

Supporting both families and the health care system

Misconceptions exist about the program, particularly regarding families hiring relatives to provide care, which is often seen as something family members should do as a matter of course. However, the self-direction program benefits not only the care recipients but also the health care system overall, according to Perrin.

“The self-direction program serves multiple purposes,” she explained. “We have a significant shortage of home-based caregivers in this country, and we need to use this program to help fill that gap. Additionally, caregivers often have to find work outside the home, which can create additional strain while caring for their loved ones. Many families experience financial difficulties without a program like this because caregivers must choose between employment and caregiving. This program allows them to support their families and manage their financial obligations.”

The program also reduces stress for those seeking care, especially regarding cultural requirements that some agencies may not fulfill. It enables clients to hire someone who speaks their language and understands their cultural needs, making them feel more comfortable having a caregiver in their home.

Furthermore, it fosters a personal connection between the caregiver and the client, as they interact with the same person consistently.

“If the client is hiring and training these individuals, they can feel at ease sharing their needs, knowing they will receive stable support,” Perrin said. “This consistency in care is essential.”

This practice also alleviates the stress on overburdened and understaffed agencies, while offering care recipients more consistent, culturally sensitive and emotionally fulfilling support.

“Access to resources, such as funds for hiring a caregiver or respite services, is essential for the well-being of both family and friend caregivers, as well as the individuals receiving care,” Dr. Sarah Patterson, research assistant professor at the University of Michigan Institute for Healthcare Policy & Innovation, told HHCN. “These resources allow caregivers to take breaks, maintain their social and professional connections or simply rest. For care recipients, having outside assistance can often ease their concerns about being a ‘burden’ to their family or friends.”