Respite care (or short-term relief) is a time for families and primary caregivers to restore and strengthen their ability to continue providing care for a child or adult with special needs.
Examples of respite care include: cognitive or physical disabilities, chronic illness or medical fragility, circumstances due to aging vulnerable children (social, emotional or behavioral issues or at-risk of abuse or neglect).
Before You Get Started
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.
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.
Assess your own need for respite. Make sure that you are making the most of your respite time, please utilize Respite Services: Enhancing the Quality of Daily Life for Caregivers and Care Receivers prepared by Dr. Dale Lund and others.
Plan for Emergencies
A personal health crisis, housing or job loss or other immediate situation that might put the care recipient in harm's way. For children, this may be called a ''Crisis Nursery.'' Emergency or crisis respite may be difficult to find. Prepare!
Familiarize yourself with providers who might offer emergency respite or even register in advance with providers. It's important.
Respite programs come in all sorts of different ways - both in-home and out-of-home.
Typical In-Home Respite 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.
A trained and perhaps licensed employee of an agency comes into the home and offer respite.
Model 2: Sitter-Companion Services
Often done as a project of a service organization, a community non-profit or a specialized agency which is willing to sponsor training and/or maintain a register of trained providers.
Model 3: Consumer-Directed Respite That the Person Providing Care is Identified or Selected By
The family identifies and selects a paid or unpaid caregiver.
Typical Out-of-Home Models
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.
Things to consider:
- 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.
Respite is offered in a provider's home : the home of a staff person, a family day care home, a trained volunteer's family home, or a licensed foster home used for respite stays. Licensing is an important consideration.
Model 5: Respite Center-based Model
- For children - Existing day care centers provide respite to children with special needs.
- For adults - Similar centers offer services for the aging population on a regular, daily, or intermittent basis.
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.
Model 7: Residential Facilities
Some long-term residential facilities have a specified number of beds set aside for short-term respite.
Model 8: Parent / Family Caregiver Cooperative Model
In cooperatives, families develop an informal association and 'trade' respite services with each other.
Model 9: Respitality Model
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.
Model 10: Hospital-Based
provides a safe setting for children and adults with high care needs, providing a sense of security parents and caregivers need when considering respite. VA hospitals may provider respite for eligible veterans.
Model 11: Camps
The chance to participate in either an integrated or adapted camp can be life-expanding. Camp may be a day or overnight experience.
Model 12: Adult Day Care Centers
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.
Supportive Resources in Pierce County
- A variety of consumer guides, workbooks, and checklists also are available on the ARCH National Respite Network.
- Help for Choosing Children's Respite:
- A Practical Guide to Respite for Your Family by Molly Dellinger-Wray and Monica Uhl with the Partnership for People with Disabilities (formerly the Virginia Institute for Developmental Disabilities), a university affiliated program at Virginia Commonwealth University
- Finding Caregivers and Respite Providers compiled by the SC Respite Coalition and Family Connection
- Family Guide to Respite prepared by Special Kid's Network's regional staff in collaboration with their community partners and the Pennsylvania Department of Health's Children with Special Health Care Needs Consultants
- Respite Care Guide: Finding What's Best For You - The Alzheimer's Association
- Help for Choosing Respite for Adults and Aging:
- Respite Care: A Break for Caregivers - provided by AARP