What is Respite?

What is Respite? Respite is planned or emergency care provided to a child or adult with special needs in order to provide temporary relief to family caregivers who are caring for that child or adult. For more information on how to find and choose respite care,  According to the Lifespan Respite Care Act (PL 109-442), Lifespan Respite is defined as 'coordinated systems of community-based respite for family caregivers of children or adults regardless of special need.'

The mission of the ARCH National Respite Network and Resource Center is to assist and promote the development of quality respite and crisis care programs; to help families locate respite and crisis care services in their communities; and to serve as a strong voice for respite in all forums.

The ARCH National Respite Network includes the National Respite Locator, a service to help caregivers and professionals locate respite services in their community, the National Respite Coalition, a service that advocates for preserving and promoting respite in policy and programs at the national, state, and local levels, and the Lifespan Respite Technical Assistance Center which is funded by the Administration for Community Living, Administration on Aging (AoA)in the US Department of Health and Human Services. In-home Models Many families prefer respite that is provided in the home. There are several advantages to in-home respite: The care recipient may be most comfortable in the home setting and does not have to adjust to a different environment. The parents/caregivers may be more comfortable if the care recipient does not have to leave the home; The home is already equipped for any special needs the child/adult may have. The cost is relatively economical (especially if you  hire and train your own provider). Transportation barriers for the care recipient are eliminated. Sometimes in-home care is coordinated by a broker, an individual or agency who agrees to recruit, provides basic training, and keeps a database of all respite providers. Families can be matched with a provider by calling the broker and are usually responsible for training, payment, and repeat scheduling.  If you have a Lifespan Respite Program in your state, they will be able to assist you in finding providers, payment resources and training options. Listed here are some of the typical models used in in-home respite. Model 1: Home-Based Services 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. Model 2: Sitter-Companion Services 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), which is willing to sponsor training and/or maintain a register of trained providers to link to families in need. Model 3: Consumer-Directed Respite 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 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 Models 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 because it gives them an opportunity 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. Model 4: Family Care Homes or Host Family Model 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. Model 5: Respite Center-based Model 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. Similar 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. Model 6: 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 Model 7: Residential Facilities 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. Model 8: Parent / Family Caregiver Cooperative Model Parent or 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. Model 9: Respitality Model 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 provided 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. Model 10: Hospital-Based 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 often provider respite for eligible veterans. Model 11: Camps 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 adapted camp can be life-expanding. Many places around the country offer such experiences, either as day or overnight camps. Such models are sometimes available for adults as well through agencies such as Easter Seals or United Cerebral Palsy. Model 12: 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. One difference between traditional adult respite, both group and in-home care, 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 services, although a few may offer half-day services on Saturdays. How to Choose a Respite Provider Some states require licensing for respite providers. If your state does not, it is even more important to do a thorough background and qualifications check, especially if you are dealing with individuals who are not associated with companies or agencies. Most company and agency providers will have done background and reference checks for their employees, but do not assume, ask instead. Here is a quick checklist to use when considering a provider: Telephone screening Personal Interview  Ask for references Check references, criminal background Evaluate costs and financing Write a contract that provides specific details The idea is to get to know the prospective provider as well as possible before committing to the relationship. Then, you must communicate your expectations in very specific terms. Finally, these expectations should be in writing to help assure that both parties understand them, and will not need to rely on memory if and when difficulties arise later.  For more information on respite for specific ages or conditions, see free downloadable ARCH Fact Sheets. ARCH also recently updated its National Respite Guidelines that may help you learn what to look for in a high quality respite setting. A variety of consumer guides, workbooks, and checklists also are available to help you sort out the myriad of options you may have in your community, and in some instances, offer guidance so you can train the respite provider yourself: Information to download if you choose. Please go to:   http://archrespite.org/consumer-information