2020 Exemplary

The ARCH National Respite Network and Resource Center is proud to announce respite services selected as Innovative and Exemplary, Innovative, or a Rising Star for 2020. 

Press Release 

Selection Criteria for Innovative, Exemplary and Rising Star Respite Services

Statement of Purpose

While there is shared agreement that offering respite to caregivers to temporarily relieve them of constant caregiving responsibilities is a worthwhile endeavor, there is scant research to support the best ways to offer respite so that benefits from receiving respite accrue to caregivers, care recipients and their families. 

Myriad important questions about respite await answers. How should providers go about establishing trusting and lasting relationships with caregivers and care recipients? What dose and frequency of respite is necessary for caregivers to realize decreases in stress? What personal qualities are important to identify and nurture in paid providers and volunteers?  Can respite programs reduce the need for out-of-home placements for care recipients? 

To answer these questions and more, to demonstrate the merit of respite services, and to ensure accountability to caregivers and families, each year ARCH recognizes Innovative and Exemplary Respite Services from a pool of applicants in North America.  

The overriding purpose of ARCH’s Innovative and Exemplary Services initiative is to establish a registry of programs and services to help advance our collective understanding of what respite best practices mean. We accomplish this by documenting the ways and the extent to which applicant services meet criteria, each carefully defined and observable, in seven key areas: 

1. using an evidence-based or evidence-informed approach; 

2. having written goals and objectives; 

3. having a program/service manual or guide to facilitate replication with fidelity; 

4. offering person and family-centered services; 

5. having a professional development plan; 

6. having an evaluation plan and collecting data according to that plan; 

7. and being sustainable as an organization. 

Services meeting all criteria in full are Innovative and Exemplary, and are especially valuable in furthering our collective understanding of respite. These services clearly define how respite occurs in their organization, document that respite is occurring as intended, and they show beneficial changes occurring in the lives of caregivers and/or care recipients related to the respite services they used.

Services identified as Innovative use a delivery approach that is novel and/or unique to a specific community or population for whom it is intended, and meet most criteria as defined in the ARCH framework, but have not yet implemented a rigorous evaluation of their service that allows replication of their approach.

In 2020, ARCH also recognizes Rising Star services that offer person and family-centered services, but have not yet met all criteria for Innovative or Exemplary practice. Rising Stars offer respite services in ways that are readily recognizable as worthwhile, and that we hope will be documented and evaluated in the future to demonstrate their merit and allow replication by others.

Services Recognized by  ARCH in 2020

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Innovative and Exemplary Respite Services

Caregiving Youth Project of the American Association of Caregiving Youth
Boca Raton, Florida

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The Caregiving Youth Project, an initiative of the American Association of Caregiving Youth, supports young people who are providing care for a family member. These youth spend an average of twenty (20) hours per week caring for loved ones and often sacrifice their personal well-being in service to others. Respite is part of the array of services offered so the young caregiver will have opportunities to engage in school, have a ‘normal’ social life and positive, age-appropriate experiences that would otherwise be inaccessible to them. Data collected on caregiving youth who participate in the project demonstrate strong positive outcomes related to school attendance and academic success, as well as positive outcomes on other measures of well-being. The respite services were initiated due to the expressed needs of caregiving youth. Visit their website.

ChildServe Respite
Johnston, Iowa

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The needs and priorities of caregivers and their children are foremost in the development of respite options offered by ChildServe. Caregivers with children birth to 25 years with a wide range of needs, including complex medical, autism, behavioral, and physical disabilities, can receive planned and emergency respite through ChildServe. The respite can be in-home, center-based, community-based, or at summer camp according to the families’ requirements. Their person-and family-centered approach is unquestionable.  The respite providers, including licensed and degreed medical staff, are carefully screened and trained. Recognizing that some caregivers and their children feel more comfortable in the care of someone they are familiar with, provided they meet strict screening guidelines, ChildServe will hire and train providers identified by the caregivers. ChildServe helps parents access funds to pay for the respite through home and community service waivers, but no one is turned away due to inability to pay. ChildServe collects outcome data and has implementation guidelines that can be used for replication. Learn more about their outcomes, service model, and implementation procedures on their website

Lifespan of Greater Rochester, Caregiver Respite Program
Rochester, New York

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The Caregiver Respite Program at Lifespan of Greater Rochester, New York, in a strong partnership with the Alzheimer’s Foundation, has for six years served persons with Alzheimer’s disease and other dementias and their families by supporting and empowering caregivers, care recipients, and volunteer providers. Using a clearly defined match process including conducting caregiver interviews and assessments, and identifying care recipient and volunteer characteristics and interests, the Caregiver Respite Program supports long and close family-provider relationships. Powerful Tools for Caregivers courses are offered as part of a family-centered approach. Volunteer training and support includes Alzheimer’s Association sponsored training as well as training in policies and procedures, job roles and responsibilities; and ways to interact socially given symptoms associated with Alzheimer’s and dementia. Forums for discussing challenges, brainstorming and peer-to-peer support are scheduled regularly. Formal, external program evaluation, seen by the program as vital to documenting program effectiveness and supporting efforts to maintain funding, was part of the Caregiver Respite Program’s design from the outset, and includes a specially designed database. A comprehensive replication manual and an evaluation report are available by contacting the program. Learn more on their website.

Rhode Island CareBreaks
Cranston, Rhode Island

The Rhode Island CareBreaks Program has supported caregivers of children and adults with long-term disabilities or medical needs, especially underserved families for whom respite services are unavailable or inadequate, by providing respite through nursing students as part of their college curriculum. Four of Rhode Island’s six colleges and universities work in partnership with the Rhode Island Office of Healthy Aging to provide training and support of junior and senior level nursing students. In addition to strengthening the respite workforce and sensitizing pre-service health care professionals to the importance of and need for respite, individual university programs allow students to specialize in policy, leadership and legislative advocacy projects. The CareBreaks program has developed a replication toolkit, Supporting Family Caregivers, for use by other institutions of higher learning. An evaluation plan is used to ensure quality assurance in day-to-day services, and to document achievement of goals and objectives. Outcome data demonstrate that CareBreaks services relieve caregiver stress, and qualitative data indicate that the bonds created between parents through a group respite component reduce social isolation. Watch the Video and see the Toolkit for starting a similar program.

RISE Wisconsin, Inc., The Respite Center
Madison, Wisconsin

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The Respite Center at RISE was conceptualized over forty years ago, when concerned staff at a local child-care center began looking for ways to support families who had no informal support systems to provide care for their children during times of crisis or high stress. The center began providing crisis care as well as planned respite for vulnerable families at risk for child maltreatment. Later, they joined with other community service programs and created a larger organization, RISE Wisconsin. The Respite Center is a corner stone of RISE. Although they collect fees on a sliding scale for services, no family is ever turned away because of inability to pay. The Respite Center is inclusive and responsive to the varied medical, social emotional, mental health, and developmental needs of children.  Learn more at their website.

Ryan House
Phoenix, Arizona

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Ryan House in Phoenix, Arizona, has been providing pediatric respite, life-enhancing therapeutic activities, and pediatric palliative and hospice care to help families navigate their children’s life limiting and end-of-life conditions. In existence for ten years, Ryan House serves 200 children and families each year through a continuity of care model in partnership with families and multiple medical and therapy providers. Children may stay up to 28 nights each year, with schedules varying according to family needs and preferences. On-line support is available to families 24/7, and volunteers are available to help families meet more global needs, such as grocery shopping. Families are supported in planning their children’s visit as well as their own use of respite time.  Ryan House regularly collects process and outcome data, as well as cost data, and they intentionally diversify funding sources to support sustainability. Relationships with families are sustainable as well, as is evidenced by their beautiful Memorial Garden. To learn more about Ryan House or to take a virtual tour, visit their website

TRE-ADD Respite Choices
Community Living Toronto
Toronto, Ontario

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TRE-ADD Respite Choices of Community Living Toronto offers hourly, overnight, camp, and community-based respite for children and adults with complex medical needs. Respite services are for children with autism whose complex behavioral needs prevent them from participating in other community respite options.  The overall goal of Respite Choices is to provide children with services and supports to prepare them to transition to a less intensive community-based respite program. Respite families may book up to one weekend a month and two weeks during the summer for their summer camp respite program. Respite Choices has a multi-disciplinary team that includes the respite coordinator, behavior services consultant, program manager, supervisor, and support workers. The program collaborates with other community professionals including school staff, teachers, psychiatrists, general practitioners, pharmacists, speech and language pathologists, and occupational therapists. TRE-ADD Respite Choices uses an Applied Behavior Analysis approach with all aspects of programming with an emphasis on communication, life skills and recreational activities. In addition to implementing behavior programming and providing ABA services, support workers assist the individuals with hygiene routines, household tasks, food preparation, and community engagement. Learn more at their Website


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Innovative Respite Services

Central Minnesota Elder Network, Respite Care Program
Alexandria, Minnesota

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This rural program has been in existence for 15 years with the overriding goal of providing caregiver support while enriching the lives of care receivers. Their program offers three respite services: In-Home Respite, The Gathering, and ongoing Caregiver Coaching. Their in-home respite program provides professionally trained volunteers who provide respite one day a week for up to four hours. The volunteers provide socialization, safety, and security for adults who are unable to be left alone. Additionally, twice a month they provide an out-of-home respite activity program, The Gathering, which provides socialization, friendship and fun for care receivers. The Gathering is coordinated by an RN and staffed by the Program Coordinator and trained volunteers at a 1:1 to 1:2 staff to client ratio. The third respite program is Caregiver Coach which provides reassurance, resources, education and support from admission and beyond discharge to assist in the care giving journey and grieving process. Coaches have gone through a rigorous training program. The Coaching Program is offered to all caregivers who receive the respite services. Visit their website.

Nurturing Newborns
Centennial, Colorado

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Nurturing Newborns offers respite to families in crisis. They serve caregivers of infants and children using a model based upon the Fussy Baby Network Model. Nurturing Newborns supports parents through an infant mental health and prevention-focused home visiting model and provides respite during times of need. Their program focuses particularly on parents of children who have spent time in a NICU. Upon their child’s return home, parents often feel anxious, scared, isolated and overwhelmed. Through their respite program, trained and experienced staff offer short term support and care for parents and their children during times of difficulty. The goal of the respite program is to help parents come through a hard time with caregiving and feel stronger, more confident, and competent. This population is often underserved, and they require skilled respite providers. The duration of services typically ranges from three to six months, but families who are at increased risk or whose children have disabilities have received services for up to two years. Learn more about Nurturing Newborns at their website.

SOAR 365 Respite
Richmond, Virginia

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SOAR365 provides an array of services for people birth to adulthood who have disabilities as well as respite for caregivers. Services include pediatric therapy, adult day programs, workforce development, summer camp, and business solutions. Out-of-home respite services are provided on the weekends, Friday-Sunday, 46 weekends a year. During these weekends, a robust schedule of activities are offered, such as arts and crafts, swimming, horseback riding, games, recreation and physical fitness and cooking classes. They also offer trips off site to events and community gatherings. Their respite program serves individuals who may need medical care and assistance with eating, using the restroom and bathing. Families using SOAR 365 services are involved in the service planning process and their opinions are important to the success and growth of the program. Visit their website.

The ALS Association, MN, ND and SD Chapter, Jack Norton Family Respite Program
Saint Paul, Minnesota

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The ALS Association of Minnesota, North Dakota and South Dakota pays a partnering home care agency to provide a professional caregiver in the home of families caring for a loved one with ALS. The Jack Norton Family Respite Program was developed by a man when he was in the early stages of ALS. He wanted to make sure that his wife had supports in place as his condition worsened. The program was developed on the understanding that the knowledge and supports required as the disease progressed required ever-increasing help for caregivers. Trained, professional care providers can assist the loved one with activities of daily living such as transferring, bathing, eating, and toileting so that family caregiver feels safe to leave the care recipient at home while receiving respite. If the care recipient requires skilled care such as suctioning, trach/vent care, etc., the organization will cover a nurse in the home. The agency connects the caregiver with the respite provider and pays for up to 18 hours of respite per month. Learn more at their website.


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Rising Star Respite Services

Alzheimer’s Disease Caregiver Support Initiative
Plattsburgh, New York caregiver support

The Caregiver Support Initiative provides services for caregivers of individuals with Alzheimer's and other types of dementia. Care Navigators work with caregivers to educate them about the support services they may require in their caregiving journey. Respite services are provided by trained professionals who may be volunteers or paid individuals. The services are person-centered to reflect both the cultural needs and level of care of the caregiver and person with dementia. Services are consumer-directed to provide caregiver choice of providers. Locations for respite services include, but are not limited to, the care recipient’s home, adult day program, or other residential facility. There is no charge for services of the Caregiver Support Initiative. Vist their website.

Bethel Life, Loving Hands
Greenville, Pennsylvania

 

Loving HANDS is a faith-based program with a monthly family-night-off for caregivers of children with special needs as its centerpiece. Relationships across individuals, families, the local faith community, schools, and service organizations in the community have developed and been strengthened through the family night-out. Those relationships have led to increased levels of inclusion in the community. Although there are no expectations that participating families attend the sponsoring church, attendance of special-needs families has increased. Volunteers ensure that accommodations are made during church services so no person will be excluded. Volunteers at Loving Hands come from other churches, schools, community organizations, and community members at large. Intentionally, and in some cases unexpectedly, long-term relationships have been formed between families with individuals with special needs and the Loving Hands volunteers. This has led to a more inclusive community. Loving Hands has been replicated at eight locations in other states.  Learn more about this Rising Star service at their website.

Dutter House
Beloit, Wisconsin

 

Dutter House is a community-based respite program offered in a warm and welcoming home by skilled and trained volunteers. It was started by a long-time teacher who bought a house and obtained a state license for family day care specifically to provide respite for caregivers of children with conditions such as autism, traumatic brain injuries, or other disabilities. The respite services, which are free to families, are supported through public and private funds. Families can schedule regular 3-hour visits, usually 2-3 times per week and occasionally on weekends. Although most of the families served are local, some families travel from up to 50 miles away to receive respite in this friendly, child-and family-centered respite program. Visit their Facebook page

Family to Family Adult Care Service
Memphis, TennesseeFamily to Family

The Family to Family Adult Care Service in Memphis, Tennessee, has experienced remarkable growth from 10 to 80 plus families during its initial three years. Serving persons with physical disabilities, behavioral and mental health challenges, and dementias, and their caregivers, Family to Family uses a person- and family-centered approach, beginning with an initial home visit, addressing global needs in addition to respite, and anticipating the emotional needs of caregivers and care recipients during challenging times. Respite is provided in-home, and may include community outings such as attending faith-based services according to family desires. Training and support are provided to staff in practical nursing skills and relevant caregiving topics as well as through role playing activities that support staff in bringing humor into the homes of the families served. This warm hearted, humanitarian spirit is especially evident in the 80 Plus Program, in which Family to Family collects oral histories from their clients who are 80 years and older. The program is assembling these stories in a documentary that will allow them to share the wisdom from these elders with others.  Visit their Facebook page.

Music Therapy Respite Program at the Cleveland Clinic Lou Ruvo Center for Brain Health
Las Vegas, NV

 

The Music Therapy Respite Program at the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas has elevated an established therapy approach among aging populations by combining it with respite, a person-and family-centered approach, and integrated therapy at no cost to families. Using trained therapists working with care recipients who have Alzheimer’s or dementia to meet individualized therapeutic goals during 90 minute music therapy sessions, and a cadre of carefully recruited, trained, supervised and supported volunteers to support care recipients and families, the Music Therapy Respite Program creates a respite space for caregivers. Caregiver support group options are also offered, while their loved ones’ social-emotional and therapeutic needs are addressed through music therapy. These statements from caregivers convey the importance of this program to caregivers and recipients, and to family relationships:  

When I see Sally in music therapy, I see my wife, not the Alzheimer’s. 

After leaving music therapy, I get my wife back. For the 15 to 20 minute ride home, we sing together in the care and it feels like old times.