Respite Care

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.

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
Camps
Group Homes
Hospitals
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.

Sitter-companion services

This service is often provided through service organization or specialized agency. 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.

Parent-trainer services

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.

Residential facilities

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.

Parent cooperative

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.

Respitality

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.

Hospital-based

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.