Are you the PCA? -Financial planning link

PCA

For this writing, the PCA is the medical abbreviation for a Patient Care Assistant. The Patient Care Assistant (PCA) is a person who works under the supervision of health care professionals and assists patients with bathing, dressing, eating, and other life skills. Although no states require a license to be a personal care assistant, if a PCA receives federal payment through Medicare or Medicaid they are required to participate in at least 75 hours of training and must pass a proficiency test to earn state certification. Benefits, coverage, eligibility, and rules change from state to state.

Some programs pay family caregivers but exclude spouses and legal guardians. In my area of Louisiana and other areas, Medicaid will pay family care providers only if they do not live in the same house as the care recipient.

The names of the PCA program changes from state to state, what is called Consumer Directed Care in one state might be called Participant-Directed Services, In-Home Supportive Services or Cash and Counseling in another. Contact your state Medicaid program to ask about its options or to start the sign-up process.

Enrolling in self-directed care involves the following steps:

1. Assessment. Your loved one is assessed for capacities, need, preferences, risks, and strength as the Centers for Medicare & Medicaid Services requires.
2. Planning. A family member or a chosen representative creates a written service plan detailing the daily living assistance required.

PCA care needs include bathing, dressing, feeding, helping with light housekeeping and laundry, managing medications, moving from a bed to wheelchair, preparing meals, shopping, supervising activities and transporting to appointments.

Contingency plans should be available when the care provider is off and instructions for fill-in caregivers should address risks and a plan should be in place for natural disasters. (hurricanes, tornados, etc.)

I might say that I do have envy of states that allow parents to become PCA’S. (12 state-funded programs that do not have any limits on who can be a PCA and do not use Medicaid money). These states (Colorado, Kentucky, Maine, Minnesota, New Hampshire, New Jersey, North Dakota, Oregon, Texas, Utah, Vermont, and Wisconsin) allow these state-funded programs to pay any relatives, including spouses, parents of minor children, and other legally responsible relatives. 

 It would seem and this falls under the heading of SUGGESTION.

That states ( Louisiana included) would allow the home care agencies to hire the patient’s relatives or friends to provide the care under limited circumstances, such as when the family lives in a rural area and adequate care is not otherwise available, or when there are special medical conditions or hardships.

 I say this due to the fact that most PCA’s do not want to come to work in rural areas for less than 20 to 24 hours a week, because it is not worth their time, possibly due to the company they work for or the mileage. However, if parents are self-employed or work part-time work, there is a need for limited hours and on an as-needed basis. No parent wants a PCA underfoot when they are not needed, however, when they are needed, they(PCA’s) are invaluable.

The parent(s) or caregivers sometimes are not given the option in hours and hiring due to where they live and are left at the mercy of the state program. Parent(s) or caregivers use hours simply due to the fact that in a crisis their loved one will have nothing in place. They know that when an emergency arises those hours become needed and its best to have a plan in place.

The parent(s) of an Autistic child endures a lot of hurt, pain, struggles with educating, doctor visits, therapies, and the reality of being a caregiver for life just to name a few. This puts in a pause in “careers.” In fact, according to the Family Caregiver Alliance (FCA), nearly 80% of adults who live at home and receive long-term care assistance depend solely on relatives and friends. This statistic represents the income loss in these families.

AUTISM SPEAKS estimates the lifetime cost of caring for a person with autism at $1.4 million. That cost can almost double if the person is impacted by an intellectual disability (having an IQ under 70).   

Most folks of Autistic children are dependent on the system in some form when it comes to caring for their loved one however, the alternative is surrendering “total care” to the state.

PLANNING: https://www.autismspeaks.org/tool-kit/financial-planning-tool-kit