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Most parents know that raising a child with Cerebral Palsy is a joyful, and exhausting, experience. But what caregivers may not know is taking time out for respite is vital for their health and well-being. Here are some options for professional respite care that will give parents a chance to reinvigorate.
About respite care
Everyone needs a little time away; alone-time to unwind, relax and recharge from their daily routine. Time away gives a caregiver the much needed opportunity to focus on their own needs, spend time with other children, or perhaps pursue an interest. However the time is spent, it allows the caregiver to return to caring for their child with a renewed energy.
Often parents who care for a child with special needs don’t take the time or aren’t afforded the respite. Though they know they need the time away, the difficulty is finding confidence in another person’s ability to properly care for their child’s unique condition. Finding someone with the right qualifications – qualifications that the neighborhood sitter likely does not possess – can seem impossible.
Respite care can provide the solution. Respite care is temporary care provided in the home of an infant, child, or adult with Cerebral Palsy, or at an out-of-home location. Community respite programs vary in locations and availability, provider types, amount of care time provided, and funding sources.
The larger social service agency community – both at the local and state level – incorporate respite services. These agencies offer an array of support services including:
- Family counseling
- Family support groups
- Parent training
- Assistive equipment services
- Access to medical services
Those offering respite care services include:
- In-Home Respite Care Providers
- Out-of-Home Respite Care Providers
- Group Homes
- Residential Care Facilities
Whether in-home, or out-of-home, respite services should be provided by a person fully able to handle the child’s unique health conditions. Special effort should be made to obtain the credentials and confidence level in those providing care. Then, the time away will truly be a pleasant respite for everyone.
In-Home versus Out-of-Home Services
In-home respite care
In-home respite care allows the child to stay at home with the comforts of a familiar environment. Needed items, such as adaptive equipment and medical supplies, are readily available and transportation is not required.
When pursuing in-home respite care, consider:
- The child is comfortable in the home setting and does not have to adjust to a different environment
- Parents and caregivers have a comfort level when the child does not have to leave the home
- The home is already equipped for any special needs the child may have
- Their is less overhead cost built into the respite provider’s fee
These services may be provided through a public health nursing agency, a social service department, a volunteer association, a private nonprofit agency and/or a private individual or service. The agency provides a trained employee who provides in-home care, often 24-hours a day, year round.
There are two prominent types of in-home service providers.
This service is often provided through service organization or specialized agency such as Camp Fire, Jaycees, Junior League, local ARC or United Cerebral Palsy Associations. A register of trained providers is maintained by the organization and linked to families in need. Sitter services are provided by individuals who are trained in caring for children with special needs.
Though similar to having a friend or relative care for the child, the person providing care is selected by the family and trained by a respite program. Providers may be paid or unpaid.
Out-of-home respite care
An out-of-home program, on the other hand, provides opportunities for the children to also break from the home environment and interact with peers and others. Although they are not in their own home, individuals with Cerebral Palsy may receive respite care from the “host family” at a provider’s licensed home or facility.
Group homes and other residential facilities may also offer short-term respite care for those with special needs. Other respite care locations may include day care centers, short-term nursing homes, hospitals, and camps. Respite care can take place for several hours or several months, depending on a family’s needs.
When pursuing out-of-home respite care, consider:
- Services are usually offered on a sliding fee schedule based on ability to pay and requirements of care.
- Although most payment is provided out of family finances, state and federal funding sources and private insurance may cover some of the expense in specified circumstances
- Services may be with or without charge depending on the model
- The child receiving care may not like the unfamiliar environment or may have difficulty adjusting to the changes
- The services may be offered in a variety of settings more restrictive than the child’s home, such as hospitals, medical centers or nursing homes
There are several out-of-home respite care options.
Family care homes or host family
Respite is offered in the provider’s home – the home of a respite program staff member, a family day care home, a trained volunteer’s family home, or a licensed foster home used only for respite stays. However, it is recommended that care takes place in a home which is licensed under state regulations.
Family day care or center-based
Sometimes respite programs contract with an existing daycare to use their facility for respite care. These facilities often offer short-term “drop-in” services. However, caution should be used here to ensure that the center is properly licensed by the state to provide these services.
Corporate foster homes
In some states, foster care regulations and licensing accommodate the development and operation of foster care “homes” which are managed by a non-profit or for-profit corporation.
In this situation, several children or adolescents who have disabilities are placed outside their family homes and live together in a homelike environment with the help of a trained, rotating staff. Corporate foster homes may provide respite care, either as vacancies occur in the homes, or as the sole purpose for which the “home” exists. Some young adults adapt especially well to this situation, enjoying a setting which allow them to be semi-independent.
Some long-term residential care facilities – group homes and supervised apartments, nursing homes, and state institutions – set aside a number of beds for short-term respite.
A parent cooperative is an informal organization of families with special needs children who trade services with one another. The program allows families to receive respite on scheduled dates and usually without charge.
This concept was developed by United Cerebral Palsy of America. This cost-effective partnership provides the family with a room, dining, and sometimes entertainment at a participating hotel while a local respite program provides care to the child.
Facility-based respite occurs primarily in hospitals. It provides a safe setting for children with high care needs. It can be a good alternative for a small community that has a hospital with a typically low census or a hospital with low weekend occupancy.
Children can receive high quality care while remaining in a familiar setting with familiar people. In larger communities, a hospital provides the sense of security parents and caregivers need when considering respite.
This option is convenient to families in emergency situations or when a single parent, without adequate family support, is hospitalized and unable to provide care to their child with severe disability.
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