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Professional personal care assistants can help to ensure the health and comfort of individuals with Cerebral Palsy. As helpers that can assist an individual with everything from simple household tasks to self-care, PCAs can be the key that allows a person with disabilities to face the day as an employee, a friend, or a family member.
The support PCAs provide, however, has a price and sometimes it can seem unaffordable. Government and non-profit resources can help a person utilize the help of a PCA, thereby enabling participation in aspects of society that would not otherwise be available.
What is a personal care assistant?
A personal care assistant, or PCA, serves as a lifeline to people with disabilities, physical, emotional, mental, chronic or temporary. They help children and adults complete basic daily routines, and are an added reinforcement that provides for a deeper sense of independence and quality of life.
For children, they can assist with physical tasks, big and small, which gives parents a respite while helping a child develop independence. For adults, a PCA can provide help with activities of daily living, health-related tasks, and redirection of behaviors while at home, in the workplace, or out within the community.
Choosing the right PCA can be a difficult undertaking, however. The first qualification any PCA must have is the ability to empathize with a person’s physical or developmental challenges. If a potential PCA cannot understand and recognize a person’s condition, and implement assistance and solutions, the employer/employee relationship is not likely to be worthwhile.
People with disabilities use PCAs with varying skill sets and professional credentials. Skill sets and credentials range from the assistance of a friend or relative in caregiving activities to the services of individuals that make a career out of offering formal health and social service to those in need.
Who are PCAs?
A PCA is an individual that volunteer their services or are formally hired to assist people in completing everyday tasks. Depending on the nature of a person’s disability, he or she may have one or more assistants helping with specific tasks, or that work on specific days. For example, a person may hire a PCA to help with morning and evening routines such as hygiene, bathing, meal preparation, feeding and home maintenance. But, they may also hire an individual to assist at the workplace or during specific travel obligations.
A parent of a child with Cerebral Palsy may require assistance with after school routines such as getting the child off the bus, in-home therapy, exercises, and homework.
Sometimes, if a person has a mild to moderate form of Cerebral Palsy, he or she may use an assistant only occasionally, or only for tasks that he or she may not be able to complete, getting lifted out of bed in the morning, and tucked in at night.
But people with severe Cerebral Palsy may need significant interventions from PCAs; they handle everything from their employer’s personal hygiene to cooking meals, managing funds, household chores, or even running errands.
Some of the tasks that PCAs may perform for a person with disabilities include:
- Assist with administration of some medications
- Assisting on outings
- Bathing, washing
- Brushing teeth
- Changing clothes
- Combing hair, self-care
- Communication assistance
- Continence assistance
- Household chores, cleaning
- Meal assistance, food preparation
- Social, emotional support
- Transitioning from a chair to furniture
PCAs work with both adults and children; if the individual that needs help is a child, the parent will act as an onsite supervisor. Although adults with high-levels of disability most often use the services of PCAs, families that include a child with disabilities may have a PCA come into the household sporadically or regularly, depending on the child’s physical and developmental needs.
Generally, PCAs will work part-time for an individual or a family. He or she will come in for specific hours to perform tasks needed by the employer. It’s rare that a family has a live-in PCA, although occasionally, that does occur.
What types of PCAs are available?
There are different types of assistants and aides that can provide invaluable support to a person with disabilities, and his or her family. Both professionals and laypeople use several names to describe these helpers; PCAs are also referred to as personal assistants, personal aides, or caregivers. And, there are other important people that can help an individual or family: Home health care professionals and direct support professionals.
Direct support professionals, or DSPs, are individuals that work directly with people with physical and developmental disabilities. The goal of a DSP is to help provide a less restrictive environment; this is achieved by performing many of the duties that a PCA would perform and helping a person with a disability express their ideas when they are outside of the home.
Home health aides, or HHAs, provide many of the same skills as a PCA and DSP. However, they are often better equipped to handle tasks related to the health and welfare of a person with disabilities. HCAs often provide for medical needs directly; they are often skilled in helping with physical therapy or exercises, as well as those tasks related to everyday living, such as eating or self-care. HHAs should not be confused with private-duty care, which is typically performed by a registered nurse. Still, HCAs often have more training than others in the assistant/aide realm.
Traditional PCAs differ from HHAs in terms of the level of care they can provide. Although many PCAs have completed some form of job training, they generally provide assistance with non-medical tasks such as self-care, feeding, grooming, and reminding individuals to take medications. HHAs and CNAs provide care under the supervision of a nurse. Care provided may include administering medication, checking vitals, helping with physical therapy, or using medical equipment – all tasks for which they have been trained.
Where can I find a trained, qualified PCA or Home Health Aide?
Finding someone to help out at home depends on several factors. If a child’s condition is less severe, but the family still needs help a few days a week, their needs will be significantly less than parents that have a child with a severe form of Cerebral Palsy. Also, assistance may be needed on a temporary basis if a child has surgery or another medical intervention.
It is in the circumstance that seeking help from a professional services provider can be immensely helpful. Agencies that provide home health care can conduct an assessment to help a parent determine what is needed, how often help is required, and what services would be most beneficial to a child.
Places that a parent might start looking for assistance are the Association of Personal Assistants and the trade group for home health aides. The organizations can provide valuable information regarding what agencies can provide a professional individual to come into a home, and can provide referrals. The organizations also provide practical information about the skills, personality, and work habits that make up a qualified, professional PCA or HHA.
Of course, there are other factors a parent must consider before hiring an assistant, including:
- Family’s budget
- If some needs may be resolved in a more efficient manner
- If an aide should be hired on a short-term, or long-term basis
Once a parent has scheduled appointments with agencies, representatives should be able to provide information about the types of services they provide, as well as information about their employees.
Some of the questions a parent should ask representatives include:
- Are the assistants professionally certified and accredited?
- Will the same person regularly come into the home?
- Have assistants been vetted for potential problems in their employment background?
- Is your agency licensed and bonded?
- How will payment be handled, and does the agency bill Medicaid or Medicare?
- What were the results of your last state review?
- What are the agency’s quality standards?
After an initial meeting, the agency will likely send several resumes to the family. When a parent schedules a meeting with potential assistants, they might ask the following questions:
- Have you worked with children with disabilities?
- Do you enjoy working with children?
- Can you provide references?
- What is your level of education and are you certified?
- Are you physically able to move and lift a child?
- What hours are you available to work, and are those flexible?
- What scope of services are you willing to provide?
- Did the aide have a positive attitude?
- Was the aide helpful?
- Did the aide handle all tasks required with competence?
- Did the aide develop a rapport with you?
- Was the aide kind and respectful?
In all instances when someone will work within a home environment, a quick reference is a good idea. Asking for an aide’s references will help a make an informed decision regarding whom to hire.
What certifications and educational credentials must an assistant have?
Although post-secondary education is not generally required to work as a PCA or a home health aid, the likelihood that a person will be employed in this field hinges on education and training.
Often, PCAs and home health aides receive on the job training before they work in homes. During this period, they are typically supervised by nurses or other higher-level health care professionals. Today, there are vocational schools, community colleges and private education facilities and elder care programs that provide education services that help people obtain work. These programs are generally several weeks long.
Individuals enrolled in PCA programs receive training in the following areas:
- CPR and lifesaving
- Interpersonal skills
- Professional protocol
- Time management
- Medical terminology
- First aid
- Hygiene and grooming
- Infection prevention
Not all states require certification for PCAs and HHAs. However, if an individual seeks employment with an agency or medical facility, it is highly advisable that they obtain training and certification. Most certified professionals seek certification through the National Association of Home Care & Hospice organization. Applicants for certification must complete 75 hours of training and pass a written exam. During this process, applicants are assessed for competency in 17 areas. To sit for the examination, an applicant must have successfully completed training at a post-secondary institution or a recognized on-the-job training facility.
Some of those areas include:
- Blood pressure monitoring
- Emergency medical response
- First aid and CPR
- And communicable disease control
Some states have their own examinations and certification processes; to find out what is required in a specific state, contact the state health department.
Often, assisting a person with disabilities may seem as though it can be a job that can be successfully filled with a friend, or a family member that does not have training. For some families, this may be a workable solution. But if a child requires a high level of assistance, the best case scenario is to hire a trained, certified assistant because of the potential for a medical emergency.
Will I be reimbursed for a PCAs salary?
Generally, if a family receives Medicaid, home health assistance is a covered service. But at what levels, and how often an aide can visit a home, is something that is determined by state Medicaid programs.
Medicaid does place some restrictions on reimbursement for aides that work in an agency or hospice settings. If an organization receives reimbursement from Medicaid, HHAs are held to the requirement of state certification and requisite training.
To find out more about the nature of coverage under Medicaid, parents can visit their state Medicaid website, or health department website.
Private insurance may also provide coverage for in-home services; insurers may also limit the scope of covered services and the frequency with which they occur.
What funding sources or grants are available to pay for PCA assistance?
Despite the need for in-home care for an aging population, and for people that have disabilities, there are very few opportunities for individuals to take part in grant programs or funding opportunities.
Government grant funding most often is granted to nonprofits and organizations that provide services; these are often awarded to entities that serve low income people. Also, grants are often awarded as part of job training programs.
In terms of individual grants paid to a family or person with disabilities, charities on nonprofit groups are the best option. Foundations typically will provide personal grants to people in the communities where they are located, but it’s often limited. These grants are designed to defray the cost of personal care.
Because nonprofits set grant requirements, awards could be made based on a person’s condition, or their finances.
How should I manage a PCA?
Managing an assistant in a home can be a challenging experience. Exactly how supervision will work depends on whether a parent is working through an agency or has decided to hire an aide privately. This is because when an assistant is hired directly by a family, they assume responsibility for all aspects of employing that person. That includes not only monitoring and correcting an aide if it’s required, but also paying that aide directly.
But even if an agency has provided an aide, there’s still going to some supervisory activities a parent must undertake to make sure a child adequately cared for. Although the aide will be paid by his or her agency, and parents will pay the agency if Medicaid or Medicare is not being billed, general oversight must be provided by a parent because the aide is working in his or her home.
For that reason, it’s necessary that a parent take some measures to make sure that the assistant/child relationship is a beneficial one to all involved. Those measures include:
- Letting the aide know the work required
- Maintaining an open dialog about a child’s needs
- Setting hours and goals
- Providing feedback to aide
- Helping the aid develop a rapport with the child
- Disciplining a child if he or she acts up with an aide
Being a supervisor is never easy; sometimes professional relationships don’t work out. When that occurs, parents shouldn’t hesitate to find someone else. Finding the right fit for a family and the aide can be a challenge, but it’s a necessary to ensure the health and happiness of a child.
What are the benefits of having a PCA?
The benefits of having a PCA or a HHA are numerous. Among those, in most cases, help from a PCA allows an individual with disabilities to remain at home, as opposed to living in an assisted living or institutional setting.
Many people with disabilities need assistance with a handful of tasks, but the nature of the tasks are so important that they cannot be avoided. For example, a PCA arrives to help a person with disabilities with their morning routines, such as bathing, dressing, preparing food and positioning the individual into their wheelchair. A PCA may also provide transportation making it possible for a person with disabilities to participate in recreational activities.
PCAs can also provide an added layer of security. Individuals with disabilities often worry about unexpected events that may occur which require assistance from. Some examples may include a fall, a medical issue, a fire or even a natural disaster.
For families that include a child with disabilities, having a trained, qualified PCA come into a home to assist removes a tremendous weight off of the parents’ shoulders. Even though a parent may feel the need to take care of all of a child’s needs, doing so can be a hardship that can affect a family’s overall health and happiness.
PCAs provide an added tool to make a support system work in a parent’s favor, and help a child get all of the care they need and deserve.
Finding a child care program or facility that meets the needs of a child with Cerebral Palsy is an expensive undertaking. Luckily, families that meet a certain set of criteria can take advantage of government funding and supports.
Government-Assisted Child Care
Child Tax Credits
Ask your tax consultant if you are eligible for:
Ask your employer if they offer pre-tax accounts for child and dependent care.
Child and Adult Care Information
Child Care Resources
Do you have doubts that someone else can care for your child?
Government assistance – also known as public assistance – is aid, service or supports that are provided to an individual by a government agency based on established criteria – income, disability, dependency or need, for example. Government resources come in the form of cash, food, services, shelter, technology, supports, and more.
- Cash Assistance: SSI, SSDI and TANF
- Child Care Assistance
- Education Assistance
- Employment Assistance
- Energy Assistance: LIHEAP, WAP and Others
- Health Care: Medicare
- Health Insurance: CHIP, Medicaid, and more
- Housing and Rental Assistance
- Nutrition Assistance: SNAP, WIC and more
- Safety and Protection