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Model State Lifespan Respite Programs
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Delaware to Establish Lifespan Respite Information Network
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The University of Delaware Center for Disabilities Studies (CDS), through a contract with Delaware’s Governor’s Commission on Community-Based Alternatives for Individuals with Disabilities, has developed a plan to address the lack of coordination of and growing need for respite care services in Delaware. CDS coordinated the Delaware Caregivers Support Coalition (DCSC), which includes family members, service providers, and advocates, to develop a plan for a Delaware-wide system to provide respite across the lifespan from birth through aging and across all disability classifications.
DCSC proposed Delaware Lifespan Respite Information Network to make it easier for caregivers to engage respite services and developed a three-year operational plan. This system would include a central administrative office responsible for oversight of information and referral to respite services, caregiver and service recipient training, public relations, provider services, and administrative services. An advisory board that includes representatives of various constituents of the system would govern the overall network. The report is available online at www.udel.edu/cds/.
CDS and DCSC are currently seeking funding of $500,000 to begin implementing the network in Delaware. To supplement the work of the DCSC, a database of Delaware respite care providers was developed on The Family & Workplace Connection website (www.familyandworkplace.org) with grant support from Delaware’s Developmental Disabilities Council.
Kansas Legislature Introduces State Lifespan Respite Bill
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On February 28, 2008, the Kansas Senate introduced a bill (S. 657) to establish a lifespan respite care program for caregivers who do not qualify for other publicly funded respite services. The legislation requires a study on the need for respite in the state, and it appropriates funds to identify local training resources for respite providers and to link families to respite services and other supports.
Gina Ervay, founder of the Kansas Lifespan Respite Coalition, was the driving force behind the bill's introduction. This week she brought parents and other caregivers to the state Capitol to testify in support of the bill. As if this wasn't exciting enough, Gina was selected as one of ten finalists in the national CVS/pharmacy 'For All the Ways You Care' Contest and appeared on Good Morning America on March 3, 2008.
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Massachusetts
Respite Coalition Head Featured in Boston Parent's Magazine
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Carrie Howland, who is currently heading up the Massachusetts Respite Coalition, came to DC several years ago to speak to the need for respite at the National Respite Coalition's Capitol Hill Lifespan Respite Summit. She has been working hard to rebuild the Massachusetts Respite Coalition and make sure it is prepared to implement a Lifespan Respite Program when federal funding becomes available. As a parent of a child with special health care needs, she is also incredibly active on health care issues in MA. She and her family were featured in this month's Boston Parent Magazine.Click here.
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Oklahoma
has implemented a statewide Lifespan Respite Program without enactment of state legislation. (click here).
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Arizona
passed legislation establishing and funding a Lifespan Respite Program in 2007, which is currently in the planning phase. Implementation is expected in 2008.(Click here).
Maryland
through state legislation, established a State Coordinating Council for Family Caregiver Support. Part of Maryland 's charge is to review successful lifespan respite care programs in other states.
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Legislation is pending in Texas.
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Oregon was the first state to implement a Lifespan Respite Program in 1997. The Director of the Oregon Department of Human Services (DHS) is charged by state law to develop and encourage statewide coordination of respite care services. The Department works with community-based nonprofits, businesses, public agencies and citizen groups to identify gaps in services, generate new resources and develop community programs to meet the needs. The Program offers technical assistance, works directly with Lifespan networks, and promotes the state respite agenda. All of Oregon's counties are currently served.
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Modeled on the Oregon Lifespan Respite Program, the Nebraska Respite Network was created by legislation in 1999 and is currently being implemented by Nebraska Health & Human Services System (HHSS). The purpose of the Network is to establish a statewide system for the coordination of respite resources that serve the lifespan. Contracts are in place between HHS and six local entities, one in each region, which are responsible for Information and Referral for families needing access to respite, recruitment of respite providers, marketing activities to increase the public's awareness of respite, coordinating training opportunities for providers and consumers, and quality assurance and program evaluation. Lifespan Respite Subsidy component of the effort is available to persons of all ages across the lifespan with special needs not receiving respite services from any other government program. Eligibility is determined based on financial guidelines. The Nebraska Lifespan Respite Program was highlighted as a model for community-based long-term care by the National Conference of State Legislatures (see Promising Practices Issue Brief: Community-based Long-term Care
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Contact:
Marcia Alber
Department of Health and Human Services
P.O. Box 95026
Lincoln, NE 68509-5026 E-mail:
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Phone: 1-800-358-8802 (471-9282 in Lincoln)
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In Wisconsin, the legislation authorizing the Wisconsin Lifespan Program requires that coordinated, non categorical respite services be available locally to provide reliable respite services when needed by families and caregivers regardless of age, disability or geographic location in Wisconsin. In collaboration with the Department of Health and Family Services, the Respite Care Association of Wisconsin (RCAW), the state administering body of the Wisconsin Lifespan Respite Program provides administrative oversight to the lifespan grantees, offers technical assistance around program and workforce specific issues, and promotes the state respite agenda. Five regional lifespan networks, one in each of the five Department of Health and Family Services regions have been established. Each network is required to provide direct stipends to families. In the last fiscal year, the networks provided a total of 12,463 hours of respite, including over 2500 volunteer hours, to 414 families.
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Contact: Jim Schroeder
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The Oklahoma Respite Resource Network (ORRN) is a statewide partnership of public and private agencies whose goal is to support families and caregivers by increasing the availability of respite care. State agencies, including developmental disabilities, mental health, aging, maternal and child health and others, have come together voluntarily with private agencies and foundations to pool resources for respite and disburse them though a voucher program managed by a single state entity. Families applying to the state for a respite voucher (families are entitled to $400 in vouchers for 3 months) are considered the employer and are encouraged to consider as potential respite providers family, friends or co workers, civic organizations, local churches, child care centers, or other appropriate public or private agencies. The Oklahoma Respite Resource Network relies on an already existing statewide resource and referral system (OASIS) to link families to the program, to respite services and to training opportunities.
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Contact: Rose Ann Percival
DD Services Division, Sequoya Building
State Capitol, Box 25352
Oklahoma City, Oklahoma 73125
(405) 522-0600
Fax (405) 522-3037
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Arizona Enacts Lifespan Respite legislation
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Arizona has enacted Lifespan Respite legislation that includes funding; (State Engrossed House Bill 2789, Chapter 263, Article 6). The program is expected to be implemented in 2008. The legislation is modeled on the national Lifespan Respite Act and will focus on providing respite to families in Arizona who currently do not qualify for any other publicly funded respite services. The law also requires coordination with other respite services, support and maintenance of a statewide respite coalition, a study on the need for respite, identification of local training resources for respite care providers; and linking families with respite care providers. For a copy of the state law, see http://www.azleg.gov/legtext/48leg/1r/laws/0263.htm
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Michigan Enacts Lifespan Respite legislation
HB 4476 Lifespan Respite Care Act creates the Michigan lifespan respite services resource network within the Department of Community Health with the intent of developing and encouraging the statewide coordination of respite care services. The resource network would develop and distribute information on respite services, coordinate the provision of respite services, promote a statewide network of community respite services, and establish a website and toll free phone number for information on respite services. Passed House February 2004. Passed Senate June 2004. Governor signed into effect July 1, 2004. For a copy of the public law and fiscal and legislative analyses click here.
State Lifespan Respite Summits
Working collaboratively with its state respite coalitions, the ARCH NRC has held two very successful and inspirational Mini State Lifespan Respite Summits in the following states:
In Alabama, the AL Lifespan Respite Network worked with the NRC to pull together Network partners from AARP, Early Childhood, AL Children's Trust Fund and other state agencies and state wide organizations, family caregivers, and friends in the State Legislature to hold the summit across the street from the State Capitol in Montgomery . The AL Network not only increased its visibility statewide, but garnered some new found support from state legislators. At the federal level, three more Congressmen from the AL Congressional delegation signed on in support of the Lifespan Respite Care Act in response to the summit.
In New Jersey, the Epilepsy Foundation of NJ and the NJ Family Support Coalition, responded to a request from Rep. Ferguson, our House champion for the Lifespan Respite bill, to hold a Lifespan respite summit in his district in NJ. Rep. Ferguson joined me as a keynote speaker and organizations and family members came from across the state to participate. As a result, Cerebral Palsy of New Jersey, Inc., Brain Injury Association of New Jersey, and Caregivers Coalition of Morris County, NJ, signed on to endorse the Lifespan Respite Care Act and pledged to help get more NJ legislators on the bill. The director of the new Caregiver Initiative at Johnson and Johnson Company based in New Jersey was also in attendance and expressed great interest in the legislation and the work of the National Respite Coalition.
North Carolina has held two lifespan respite summits in the last two years. Senator Dennis Byars (NE) presented at the first summit as did Chris Urso from the NC State Department of Aging. The second NC summit in May 2007 brought together state agencies and organizations, local providers, parents and caregivers to plan for Lifespan Respite Implementation.
Tennessee, Kansas, and Illinois state respite coalitions held similar events, drawing statewide support for lifespan respite.
The most recent event in Pennsylvania, hosted by the Pennsylvania Respite Coalition, UCP of Pennsylvania and the PA Special Kids Network, brought together state agencies, disability and aging programs, and parents to strengthen their coalition and plan for the future. You can visit their web site by clicking here.
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What does a lifespan program look like and what does it provide?
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Each program has been adapted to meet their individual state needs, but the defining characteristic of each is the statewide, coordinated approach to ensure respite services for those in need. Many of the lifespan respite programs have established community-based networks that rely on the development of local partnerships to build and ensure respite capacity. These local partnerships include family caregivers, providers, state and federally funded programs, area agencies on aging, non-profit organizations, health services, schools, local business, faith communities and volunteers.
These networks are the central point of contact for families and caregivers seeking respite and related support regardless of age, income, race, ethnicity, special need or situation. Respite stipends may be limited by income eligibility. Providing a single point of contact for families to access respite information and services is crucial to assisting families in helping themselves.
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Services typically offered by Lifespan Respite Programs are providing public awareness information to the community and building diverse respite partnerships, recruitment and training of paid and volunteer respite providers, connecting and matching families with respite payment resources and providers, coordinating respite related training for providers and caregivers, identifying gaps in services and creating respite resources by building on existing services.
For a list of "Principles for a Quality Respite Program," developed by the Lifespan Respite Task Force, click here.
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State Coalition Directory
State Lifespan Respite Summits
Next National Conference:
Des Moines, Iowa,
September 4-6, 2008
Call for Papers
International Short-Break Conference
Copenhagen, Denmark
September. 24-28, 2008
Sponsored by the International Short Break Association.
For more information, click here.
National Library, Copenhagen
Websites for State Respite Coalitions:
Alabama
Connecticut
Florida
Iowa
Kansas
Maryland
Nebraska Respite
Nevada
New Jersey
North Carolina
Oregon
Tennessee
Utah
Wisconsin
Principles for a high quality respite program have been developed by the Lifespan Respite Task Force.
Respite Start-up Manuals:
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State Respite News 
