I have no qualms with admitting to or speaking about the high level of needs I as a quadriplegic need in order to survive and thrive as an active member of society. But for several years now since my transition home from rehabilitation after a severe spinal cord injury left me paralyzed from the neck down, I have come to learn that it is not living with the direct physical limitation that my disability places on my life that is most difficult. Rather receiving and maintaining adequate and continuous (24-hour split shift) personal care that meets all of my complex medical needs is what accounts for the majority of the current stress in my life today.
Within the Affordable Care Act lies an opportunity to develop a service delivery system that would finally ensure all individuals the right to live in the community by establishing policies and guidelines to ensure that health services are available in the most integrated and least restrictive setting appropriate to their needs as enshrined by the United States Supreme Court’s 1999 Olmstead decision. The Community First Choice (CFC) Option is a community-based Medicaid state plan service which includes hands on assistance, safety monitoring, cueing, assistance with activities of daily living, instrumental activities of daily living and health related functions based on functional need, not diagnosis or age.
What’s the difference from programs we have today? CFC applies to all types of disabilities, as opposed to programs that focus on various populations (traumatic brain injury, developmental disability, mental illness, all have separate programs). For enrollment into CFC, enrollees must have needs that rise to the level required for nursing home care. The intent of the program is to create an alternative to institutionalization by incentivizing the state by offering its citizens greater freedoms as well as increased federal support. Specifically, CFC offers participating states an additional 6% federal match (the state covers 50% of the cost and the federal government offers an additional 56%) that both attracts states to enroll individuals to the community-based program while at the same time reducing costly institutional care.
To ensure community supports through CFC are adequate enough to address the needs of those transitioning out of nursing homes and other long-term care facilities, advocates have been pushing state lawmakers to amend the Nurse Practices Act to allow for an advanced class of Home Health-Care Aides that, with additional training and supervision, would be certified to do tasks currently considered “skilled”. In the world of home care, Personal Care Aides and Home Health Aides cannot engage in activities considered outside their scope of practice, such as catheterization, administering medication, suctioning ventilator dependent patients and many other tasks….although Consumer Directed Personal Assistance Services (CDPAS) already allow patients to direct their aides to do skilled tasks as long as they agree to taking on the responsibility of hiring, managing, and terminating their own caregivers. Without allowing caregivers under the CFC program to do skilled tasks (under the supervision of a Registered Nurse, similar to the way Physicians Assistants operate under Medical Doctors) additional resources will have to be spent approving and paying for different professionals to do different tasks at different times of the day adding a mountain of costly administration as well as forcing enrollees to be cared for by multiple different individuals for different tasks.
On a personal note, I currently live with my parents who manage my skilled needs such as my medications and daily bowel regime without whom I would need a daily nurse to come in to my home (preventing my personal care attendant to be present because of billing purposes) and have to worry about an additional line of professionals entering my home where under the Community First Choice Option I could delegate my personal care as well as all of my skilled needs to my current caregiver who is currently prohibited from doing many of the things I need to remain healthy in my own home. A day of action is in the planning stages where advocates will once again gather to make their case to lawmakers.