Caregivers take note...you should consider respite services much earlier than you think you will need them.
Before You Get Started
Respite is a service that provides a temporary break between the family caregiver and the care recipient. It is most important for caregivers to plan ahead if possible when they begin their caregiving activities to access intermittent breaks from caregiving. To be most effective, you should consider respite services much earlier than you think you will need them. Respite will be most helpful if you use it before you become exhausted, isolated, and overwhelmed by your responsibilities. Respite services can be beneficial, meaningful, and enjoyable to both the caregiver and the care recipient.
- Family caregivers need to have sufficient and regular amounts of respite time. Give careful thought to how you want to spend your respite time. Respite needs to be meaningful and purposeful for caregivers to fulfill their needs and plans, as well as safe and enjoyable for the care receiver.
- Respite is most effective when combined with other services and assistance, but don't wait to take your break. You may also benefit from additional financial support, education, emotional and social support that provide a sense of belonging with others, but before you can seek out those services, respite will give you a chance to step back and recharge.
The ARCH National Respite Network and Resource Center provides the following helpful information on various types of respite available to caregivers.
Types of Respite
Formal and informal, in-home and out-of-home respite options may exist in your locality. Respite programs may utilize an available bed in a health care facility for families who require extended respite options and whose family member or friend requires skilled care; whereas, other respite programs may only offer time-limited (a few hours) services in the family's home. In addition, respite services may be available to families through formal programs that hire and train their staff or may be available to families through informal networks (e.g., volunteer or faith-based initiatives, parent cooperatives, or cash subsidies from states to purchase respite through relatives and friends).
Respite services are usually offered on a sliding fee schedule, or there may be a combination of family fees, state, and federal funding, including Medicaid waivers, and/or private insurance. Providers may be paid or unpaid in many of the following models.
The following descriptions are examples of local respite program 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 an agency that agrees to recruit, provides basic training, and keeps a database of all respite providers. Families can be matched with a provider by calling the agency and are usually responsible for training, payment, and repeat scheduling. If you have a Lifespan Respite Program or a State Respite Coalition in your state, they will be able to assist you in finding providers, payment resources and training options. On line services, such as Care.com, Rewarding Work, or online state disability or aging worker registries, can help you find an independent respite provider that you hire and train yourself.
Listed here are some of the typical models used in in-home respite.
Model 1: Home-Based Services
In addition to respite providers you may find and train yourself, 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. This approach may also be available for in-home or out-of-home respite.
The state or agency offering the vouchers may employ a fiscal management agency to help with payment and necessary payroll taxes for respite providers. The sponsoring agency may also utlizie a list of possible agencies or respite providers to provide respite and families may select from this list of approved 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 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 or group home used 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. 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 Easterseals, 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.
Model 6: Respite in Foster or Group Homes
In some states, foster care regulations and licensing accommodate the development and operation of foster care or group "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 foster or group 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.
Increasingly, group home settings for older individuals are offering long-term residential care, and may also offer respite services. You can check with an Area Agency on Aging (AAA) or an Aging and Disability Resource Center (ADRC) to see if these exist in your community. Contact the Eldercare Locator to find the AAA or ADRC near you.
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 a sense of security parents and caregivers need when considering respite. Veterans (VA) Medical Centers often provide 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 with disabilities as well through agencies such as Easterseals or United Cerebral Palsy.
Model 12: Adult Day Care Centers
Adult day care centers, also known as adult day services, have been providing a form of respite for caregivers for decades. Such services have expanded dramatically in the last twenty years 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 dementia, including Alzheimer's disease, 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.
⇒ For more helpful information, visit the ARCH's ABC's of Respite: A Consumer's Guide for Family Caregivers
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.