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Children's Voice Article, May/June 2002

Care for the Caregivers

Around-the-clock care of children with special needs is a daunting responsibility. But among child welfare professionals, caring for the caregivers is of increasing concern.

by Michelle Y. Green

It seems a simple matter: A couple with a young infant sets a movie date to recharge and reconnect. A grandmother breaks from watching her grandson to make a doctor's visit. A foster family plans a weekend vacation. A stressed single mother takes the afternoon off to regroup.

But for caregivers of children with mental or physical disabilities, chronic or terminal illness, or other special needs, even a few hours off can seem well out of reach.

Respite care-temporary relief for primary caregivers to reduce stress, support family stability, prevent abuse and neglect, and minimize the need for out-of-home placement-is nothing new. Rooted in the deinstitutionalization movement of the late 1960s, during which families became primary caregivers for loved ones previously cared for in hospitals or other facilities, the concept took hold in the '70s as awareness of child abuse and neglect increased and "crisis nurseries" were formed. In the '80s, respite care met the needs of medically fragile infants with HIV/AIDS and prenatal drug exposure; in the '90s, children with serious emotional disturbances and adults with conditions such as Alzheimer's became candidates for respite care.

With each new development, human service agencies retooled to provide temporary safe havens for children and the families who cared for them by expanding existing services or coordinating with other groups to provide respite care. Local networks sprang up as providers sought ways to meet the needs of their clients and to better coordinate funding and access to care. Local initiatives evolved into what has become a national movement to create "cradle to grave" respite networks.

Nebraska, Oregon, and Wisconsin have passed lifespan respite acts, and Oklahoma has implemented a lifespan respite program without legislation. Hillary Rodham Clinton (D-NY), Olympia Snowe (R-ME), and Barbara Mikulski (D-MD) have introduced a Lifespan Respite Care Act in the U.S. Senate. The respite care movement now encompasses adults and children who require ongoing care and supervision in all categories of need-from autism to Alzheimer's-and embraces birthfamilies, blended families, kinship caregivers, and foster care and adoptive families.

Momentum for planned and crisis respite care is rising. But in most communities, such care is a patchwork of formal and informal arrangements that may consist of in-home babysitting by a volunteer or trained service provider, drop-in visits to a day care or therapeutic child development center, short-term stays in a residential facility, child enrollment in a camp or recreational program, or foster parents providing respite for one another. From community to community, the quality and availability of family respite services varies widely in type, scope, duration, cost, staffing, and ease of access. But what is clear across the board is the compelling need for such services. The U.S. Department of Health and Human Services says more than 125,000 children with "special needs" are waiting to be adopted in the United States. Studies by the American Academy of Child and Adolescent Psychiatry indicate up to 80% of children in foster care have developmental delays or other mental health problems. Recent research confirms that without adequate family supports, children with disabilities are nearly four times more likely to be victims of neglect or abuse than are children without disabilities.

By contrast, respite services reduce the risk of abuse and neglect, help families avoid out-of-home care, and improve family relationships. According to the National Child Abuse Coalition, planned and crisis respite care prevents child abuse by increasing parents' ability to cope with the pressures of child care, enhancing parent-child communications, and improving family access to health and social services, among other factors.

Barriers to Care

The ARCH National Respite Network and Resource Center estimates as many as 20,000 respite programs are serving approximately one million families in the United States. Unfortunately, not all families who could benefit from respite care receive it. Many areas have no respite services at all, or none that serve a family's particular category of need. A family seeking respite care for a child with mental health needs, for example, will not benefit if the only services available are for the physically disabled.

Among families who need it most, respite services may be available but unadvertised. Agencies may be reluctant to announce respite care when a shortage of funding or providers create an inability to meet the demand.

Families may shun respite services-sometimes because they don't trust the agencies, institutions, or providers, or because of emotional barriers, such as guilt. A family might ask, "Are we being blamed for the child's condition? Will they think we can't take care of our child by ourselves?" A foster parent may question, "Will they think I'm not fit to be a foster parent? What if something goes wrong? Could my license be revoked?"

Many families believe that no agency or provider could possibly be trusted to take care of the specific medical, physical, or emotional needs of a son or daughter, or that such care would disrupt their child's progress. As one provider put it, "For some parents, giving them a night off to go out to dinner or catch a movie is just giving them someplace else to worry."

The kind of care offered may not match the family's preferences or needs. A couple wanting to spend a weekend home alone, for example, will not be well-served by a program that only offers in-home care. A drop-in day care center can't accommodate the family wanting to take a week's vacation.

There are difficulties on the other side of the table as well. Agencies lament the shortage of competent respite care workers. Respite care, like other child care work, is generally low-paid. Finding workers with the specialized training necessary for emotionally or medically fragile children is often difficult. Lack of agency coordination, literacy and language barriers, funding shortfalls, the proliferation of paperwork, and regulatory and licensing requirements are other stumbling blocks service providers face.

Larger issues loom nationally, but promising groundwork has been laid for the next evolution of respite care.

A Coordinated System of Care

Despite consensus among the medical community, advo-cacy organizations, and human service agencies about the value of respite care, no national standards for services, nor uniform licensing or reporting guidelines, exist. In 2001, CWLA, ARCH, and the Casey Family Programs National Center for Resource Family Support launched a joint initiative to lay the foundation for standards of respite and crisis care for families.

"Foster care managers have been saying, 'We need respite care for the caregivers,'" says Pamela Day, CWLA's Director of Child Welfare Services. "This endeavor is a partnership among organizations that have become increasingly concerned about services that aren't talked much about in the field but are lifelines for children and families."

A first step was to determine the kinds of respite and crisis care presently available, how those services are provided, and their availability in comparison with need. CWLA and ARCH surveyed public and nonprofit child welfare agencies and respite care providers; held focus groups with agency representatives, care providers, foster parents, caseworkers, and other stakeholders; and identified four sites that have developed promising models for respite and crisis care services. In addition, the National Resource Center for Foster Care and Permanency Planning conducted a telephone survey of foster care administrators in 45 states.

The surveys showed wide differences among agencies in populations served, qualifying conditions for receiving services, where services are offered, income eligibility requirements, and recruiting service providers. For example, the average cost of respite and crisis care varied widely-$8.24 to $15.43 per hour for crisis care, and $8.81 to $10.21 per hour for respite care. (The actual range was $1.25 to $36.00 per hour.)

The surveys did reveal important similarities. Families are most often referred to respite care services by social service agencies and word-of-mouth. Fewer families and children receive crisis care than planned respite services, although more hours of crisis care are provided. Substantial numbers of families are on waiting lists or are being turned away from both planned and crisis respite services.

Not surprisingly, the surveys confirmed what was generally known: From an organizational standpoint, respite and crisis care services are delivered in widely varying ways from community to community and from state to state. (See the sidebar below.)

Next Steps

Although significant progress has been made in the area of family respite services, the goal of a responsive, workable system of respite care has not been fully realized. Survey results, site studies, focus groups, and the literature suggest the need for several actions:
  • Address families' concerns about agencies and providers. Explore the attitudes of agency staff, include families on planning and review boards, offer specialized training to respite providers, create media outreach campaigns, and send clear messages to families and staff about the value of respite care.

  • Develop standards of respite care. Standards should clearly define appropriate levels of care for infants, teens, siblings, and other groups; address quality, safety, liability, and confidentiality issues; outline expectations for provider training and support; lend administrative guidance for caseload ratios, provider rates, and reimbursement; and formalize the involvement of family members, the managed care industry, and other stakeholders.

  • Continue research and evaluation. Formal quantifiable cost-benefit analyses of respite services will better equip agencies to face funders, legislators, and the public about the value of planned and crisis respite care.

  • Educate stakeholders. Training and education for families, child welfare workers, public and private agencies, and legislators will bring about a clearer understanding of the ways respite care can contribute to family preservation and child abuse prevention efforts. This includes social work education, foster parent preservice and inservice curricula, information booths at community events, op-ed pieces, and training in presentation techniques.

  • Support state and national lifespan legislation. The Lifespan Respite Task Force is a group of national organizations and state coalitions convened by the National Respite Coalition. For more on the Lifespan Respite Task Force and proposed national legislation, visit www.chtop.com/tforce.htm.
A unified approach to caring for the caregiver-that marshals relief, support, and a wealth of resources to families-will benefit the most vulnerable of our children and advance the successful care for all.

Oklahoma: Families as Experts

Anthony Adigwe and his wife hadn't taken a vacation in six years because of concern about the care of their youngest son, Jonathan, who has cerebral palsy. "We were never comfortable leaving him with anybody else," says the father of four. "He has problems we don't want other people to have to endure."

But an innovative program conceived by the Oklahoma Respite Resource Network has changed that. The program provides quarterly vouchers of up to $400 to qualifying caregivers, allowing them to make their own choices and manage their own respite needs. Families can locate respite resources by logging on to OASIS-the Oklahoma Areawide Services Information System-a free statewide database.

"We didn't want in-home care," Adigwe explains. "Through a referral, we found a provider who lives about 15 miles away-an LPN who has adopted children with the same kinds of problems as our son." Several face-to-face meetings and an overnight stay convinced the Adigwes the provider would have no trouble caring for Jonathan, who requires medication every six hours and has a shunt and feeding tube. "She asked us everything about him, had us write everything down," Adigwe explains. "She was very conscientious, so eager, and willing to provide help."

Begun in 1998 as a pilot serving 15 families in one county, the program now serves 1,300 families statewide and has more than $1 million in funding from state agencies and public and private grants. More than half of those funds pay for respite care involving children. "Our goal was to try to honor family support principles: If you put resources in the hands of families, they'll be more resourceful and cost-effective than government will be," says Program Manager RoseAnn Percival.

Once approved, families can purchase respite services in any way they choose. Although foster parents cannot yet participate, adoptive families and kinship caregivers are treated the same as birthfamilies. OASIS maintains a registry of respite providers, but families using the registry must evaluate providers themselves. Eight-five percent of those accessing the service use somebody they already know.

Does it work? Percival reports a 98.4% satisfaction rating among families surveyed last year. "We have hundreds of calls from people each month wanting to sign up."

Adigwe, who has used voucher payments three times since the statewide program began, agrees. "It's the first time we've been able to trust somebody else with his care."

Arizona: A Community Network Start-up

Provider interest and consumer frustration were the catalyst for change in Tucson. The Community Respite Care Network, a convening of 15 private and public agencies and family caregivers exploring the common issues of respite care, is the result.

"Ours is a fairly new initiative," says network member Susan Abagnale, Division Director for Casey Family Programs. "We're a local group that has come together to find timely, appropriate respite care for families."

Abagnale describes the present climate for respite care as a dis-jointed network of services. No other collaborative network of this kind exists in the state. Arizona foster families are eligible for six days of respite care per year, but care must be provided by licensed foster families. Adoptive families who have children with special needs are eligible for 12 days of respite care as a subsidy item. Only one of the 15 agencies in the Tucson area offers crisis respite services, funding being the primary stumbling block.

"In the network, we have foster care agencies who provide their own respite," Abagnale says. "Adoption subsidies and funding are available through the state Department of Disabilities." As of last year, new money is available through the Division of Behavioral Health Services, although accessing those funds, she says, is still problematic.

Focusing initially on children, the network has expanded to include lifespan issues. Meeting monthly to identify the challenges consumers and providers face, the group has distributed provider and consumer surveys, attended conferences and training workshops, and gleaned information from respite networks in other states. "Affordability and availability are key issues," Abagnale says. "Parents want providers they feel confident leaving their loved ones with. They need to know their child will be okay."

Michigan: Blending Funding

As in other states, a variety of independently operated agencies provide respite services in Michigan. Some, like the Lansing Area Parents Respite Center, provide planned respite services in the family's home, in schools, or in its own respite houses. The Community Respite Center, on the other hand, offers hourly respite, respite drop-in, and child care in a medical care facility. But what these and more than 100 area agencies in the Michigan Respite Coalition have in common is reliance on blended funding.

"There's been little...innovation in the last five years in the financing of respite services," says coalition chair Doug Cunningham, Executive Director of the Community Respite Center. "Respite care is not man-dated by the state, and mental health funds, which support respite care services in Michigan, have been cut in some communities as a result of the [recession] and state budget cuts."

What is new is the use of creative fiscal strategies that have enabled respite organizations in Michigan to expand services to a broader variety of clients. "Organizations like ours are setting up as nonprofit, independent centers for respite care that combine educational models with medical models, enhancing coordination between existing community agencies," Cunningham says.

By contracting for space with a local medical care facility, Community Respite Center shares food preparation, maintenance, and other fixed costs. By reducing such costs, the agency has been able to plan an expansion of services in a time of budget cuts, including lifespan day care, overnight care, and hospice respite. It has also developed contracts with the local community action agency to be a Head Start center. The center finds qualified workers through a local community college, through a mutually developed child development course.

Members of the Michigan Respite Coalition are taking a close look at similar innovative strategies in quarterly roundtable discussions, where members explore taxation issues affecting families, share information about grants, receive training about the needs of special populations, and discuss options for better coordination of services.

"Unless respite care is diversified and financially viable, and programs are formalized," Cunningham says, "it will never be anything more than a feel-good program."

Florida: Legislative Action

The Florida Respite Coalition is getting down to business. Formed in 1997 as a 501(c)(3) nonprofit corporation, the 300-member coalition has contracted with the state Department of Children and Families to develop a statewide community-based lifespan respite care system.

Florida is one of several states that fund a private nonprofit respite coalition, ensuring a safety net that provides families affordable, accessible respite services. "Our goal is to educate the Florida legislature that respite care is a cradle-to-grave issue, encompassing all populations, from children to elders," says coalition Executive Director Rebecca Varnadore.

Florida law requires providers of respite for foster parents to attend training similar to that of foster parents. Foster families, permitted 12 days of respite per year, provide respite for one another. Respite is not available through adoption subsidy.

Transformed from a grassroots volunteer organization, the coalition is taking on a continuum of respite care duties, from needs identification to developing an integrated management information system to fiscal management and oversight. Though not involved directly in providing services, the coalition serves as an outreach, educational, and resource coordinator for the state. Passage of a funded federal and state lifespan respite bill is a top priority.

"Respite service programs require many resources," Varnadore says. "They can be expensive programs to provide. There are administrative challenges encompassing training, scheduling, recruiting, and placement of respite care workers." That's why many don't want to bother with respite services, she says, but this sends a message that there is no need. "That's an erroneous message that needs to be corrected."

The coalition is tasked with integrating standards of care and creating a provider training program. They believe this strategy will help streamline program costs and create a universal standard of care. "We're bringing groups together to recognize what families want and looking at how agencies are providing care," Varnadore says. "Then, we can begin to duplicate successful models around the state and around the nation."

Michelle Y. Green is a freelance writer in Upper Marlboro, Maryland. This article is based on an unpublished report tentatively entitled Planned and Crisis Respite for Families with Children: A National Perspective, by Susan Dougherty, with Pamela Day (CWLA), Maggie Edgar (ARCH), Elisabeth Yu (CWLA), and Casandra Wade (ARCH). For more information, contact CWLA Director of Child Welfare Services Pamela Day at 202/942-0262 or pday@cwla.org.

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