Types of Respite Services
Respite is temporary care for the relief of primary caregivers from their caregiving responsibilities. Respite is meant to prevent a crisis or any negative physical or emotional effects for the family caregiver and care recipient and is designed to ensure the well-being of not only the family caregiver, but also the family as a whole. However, sometimes respite is needed in an emergency situation to prevent the exacerbation of the crisis. When emergencies arise and a family caregiver becomes ill or cannot provide care for other reasons, emergency respite becomes an invaluable resource.
Home-based respite 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 homemaker service or home health agency. A trained and perhaps licensed employee of the agency is available to come into the home and offer respite. Ideally, services should be available twenty-four hours a day, 365 days per year.
Sitter services may be provided by individuals who are trained in caring for children or adults with special needs. Often this type of service can be a project of a service organization or specialized agency (Camp Fire, Jaycees, Junior League, local ARC or United Cerebral Palsy Associations) that is willing to sponsor training and/or maintain a register of trained providers to link to families in need.
This model is similar to having a friend or relative volunteer to care for a child or adult with special needs. The primary difference is that the person providing care is identified or selected by the family and trained by a respite program or by the families themselves. Providers may be paid or unpaid. If they are paid, it is often through a voucher program offered directly to family caregivers to allow them to locate, hire, train and pay their own providers.
Out-of-home respite provides an opportunity for the care recipients to be outside the home. This may be a particularly attractive option for adolescents who are preparing to leave the family home for a more independent living arrangement, for young adults with disabilities who prefer to be with people their own age, or even aging populations with mild to moderate memory loss. Such settings provide an opportunity for them to experience new surroundings, different expectations, peer relationships and even cognitive and emotional stimulation. Families are free to enjoy time in their own home without the constraints of constant care and they can devote more attention to siblings and other family members.
Listed below are some special considerations regarding out-of-home models.
- Transportation may be required and special equipment may need to be moved.
- The individual 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 care recipient's home, such as special medical centers or nursing homes.
Family Care Homes or Host Family
In this model, respite is offered in the provider's home. This could be the home of a staff person from a respite program, a family day care home, a trained volunteer's family home or a licensed foster home.
used only for respite stays. Offering respite in a provider's home enables an individual to receive services in a more familiar setting. It is recommended that homes used under this model be licensed under state regulations governing foster homes or similar homes used for group care.
Some respite programs contract with existing day care centers to provide respite to children with special needs. This is an effective model in rural areas because it allows children to be in a supervised environment in a facility that may be relatively close to home. Children may be placed in these settings on a short-term "drop in" basis as well. Day care centers may be housed in churches, community centers and after school programs. Not all centers are licensed by the state to provide services. Respite centers utilizing church, mosque or synagogue social halls, community centers or senior service centers offer similar services for the aging population on a regular, daily or intermittent basis (e.g., one weekend day a month).
Certain service organizations, such as Easter Seals, human service agencies or community-based private independent respite providers may offer respite in a center-based setting, employing trained staff and/or volunteers. These settings are usually regulated by the state.
Adult day health care centers
Adult day care centers, also known as adult day services, have been providing a form of respite for caregivers for more than twenty years. Such services have expanded dramatically in the last decade as demand has increased but also as new funding sources, such as Medicaid waivers, became available. Adult day care centers provide a break (respite) to the caregiver while providing health services, therapeutic services and social activities for people with Alzheimer's disease and related dementia, chronic illnesses, traumatic brain injuries, developmental disabilities and other problems that increase their care needs. Some adult day care centers are dementia specific, providing services exclusively to that population. Other centers serve the broader population.
Respite in Corporate Foster Home Settings for Children and Teens
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. These corporation operated foster homes may provide respite care, either as vacancies occur in the homes or as the sole purpose for which the "home" exists. Some adolescents adapt especially well to this situation, enjoying a setting that is like semi-independent living.
Some long-term residential facilities, particularly those serving persons with developmental disabilities, have a specified number of beds set aside for short-term respite. Some examples of such facilities are community residences such as group homes and supervised apartments, nursing homes and state-owned facilities. Increasingly assisted living programs or nursing homes for the aging population are offering respite for overnight, weekend or extended stays.
Parent and family caregiver cooperatives have been developed in communities, especially rural areas, where respite services are very limited. In this type of model, families of children with disabilities and/or chronic illnesses develop an informal association and "trade" respite services with each other. This model has been used successfully for young veterans with traumatic brain injury or other conditions who are living at home. This exchange program allows families to receive respite on scheduled dates. In most parent or family caregiver cooperatives, fees are not assessed. This model has proven to be especially effective for families whose children or other family members have similar disabilities. (ARCH National Respite Network and Resource Center)
Respitality is an innovative concept for providing respite. It provides a cost-effective partnership between the private sector and respite agencies. During Respitality, participating hotels provide the family with a room, a pleasant dining experience and perhaps entertainment while a local respite program provides respite either in the family's home or in an out-of-home respite situation. The Respitality concept was developed by United Cerebral Palsy of America.
Facility-based respite occurs primarily in hospitals. It provides a safe setting for children and adults 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. Individuals 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. Veterans (VA) hospitals offers respite for eligible veterans.
Hospice occurs primarily in home. It provides a setting for compassionate end of life care. Hospice respite can be provided in a hospital or other appropriate setting for those with high care needs. The hospital or other out of home setting respects the values of hospice and can provide security to caregivers need when considering respite.
Camp has been a form of respite for many families for many years. Whether or not a child has a disability, camp can be a positive experience for any child as well as a break for parents/caregivers. For children with disabilities, chronic or terminal illnesses, the chance to participate in either an integrated or an adapted camp can be life-expanding. Many places around the country offer such experiences as either day or overnight camps. Some camp settings are used for adult populations as well.
One difference between traditional group and in-home adult respite and adult day care is that adult day centers not only provide respite to family caregivers but also therapeutic care for cognitively and physically impaired older adults.
Generally, although programs vary, participants attend the program for several hours a day to a full day (eight hours) up to five days a week. Most programs do not offer weekend or overnight services although a few may offer half-day services on Saturdays.
Respite centers and nursing facilities do provide overnight services for qualified individuals.