Respite - A Gift of Time
Introduction by Hildy Dinkins, Psy.D.
Download Article

In recent years, advocates for persons with brain injury have been successful in bringing respite services to the families of individuals with a brain injury. This is occurring both in the form of traditional respite services, often used to divert crises, and in newer ways to provide recreational and leisure outlets that afford families and caretakers a pause. There is evidence of expanded understanding and acceptance by third-party payers and insurance adjusters of the exponential improvement in emotional health that respite service provides. We are seeing increased willingness on their part to make many respite services a reimbursable expense, particularly in those cases where it is used to divert the need for more costly long-term care. This has expanded respite options to include short stays within community-based residential and supported-living programs, in-home companion and support services, and recreational programs such as various camps and caregivers’ days out. Personal stories, anecdotal evidence, and some research have shown that respite services are a crucial intervention for both persons with brain injury and the families and caretakers who live with the everyday repercussions of brain injury.

Much of the information on respite care explored on the following pages is centered around services designed for children with disabilities. The general concepts, however, are applicable to persons with brain injury and their families.

Respite for Children with Disabilities and Chronic or Terminal Illnesses
By Jennifer M. Cernoch, Ph.D.

Background
Respite programs emerged in the late 1960’s as a result of the deinstitutionalization movement with the belief that the best place to care for a child with disabilities was in the child’s home and community. Recognizing the effectiveness of respite services, in 1986, Congress passed the Temporary Child Care for Children with Disabilities and Crisis Nurseries Act (as amended). This Act established federal funding to create temporary child care (respite) demonstration projects. Administered through the U.S. Department of Health and Human Services, Children’s Bureau, competitive grants have been awarded to States since 1988 to assist private and public agencies in developing model respite services across the United States.

Purpose
Respite programs provide temporary relief for families or caregivers. Additional family benefits include: allowing the family to engage in daily activities thus decreasing their feelings of isolation; providing the family with rest and relaxation; improving the family’s ability to cope with daily responsibilities; maintaining the family’s stability during crisis situations; helping preserve the family unit by decreasing the pressures that might lead to divorce, institutionalization, abuse and/or neglect; and, making it possible for people with disabilities to establish individual identities and enrich their own growth and development.

What are Respite Care Services?
Respite, temporary relief for caregivers and families, is a service in which care is provided to children with disabilities, chronic or terminal illnesses, and/or to children at risk of abuse and neglect. Respite for families who have children with disabilities, or chronic or terminal
illnesses, is further defined by the federal legislation as in-home or out-of-home temporary, non-medical child care. Most of these respite programs offer services to families on a sliding fee scale with hourly and/or daily rates. Respite services can range from a few hours of care up to three months of care depending on the needs of the families and the type of respite program model available in a community. The ages served by respite programs range from infancy to adulthood. Often programs serve a particular disability or illness (e.g., children who have HIV-related conditions, children who are medically fragile, children with mental retardation).

Many respite services are incorporated within larger social service agencies both at the community and /or state levels which provide an array of support services to families. Some of these support services can include: family counseling; family support groups; parent training; service coordination; assistive equipment services; and, access to medical services.

Respite Program Models
Respite program models for families who have children with disabilities, or chronic or terminal illnesses, may differ in each local service area according to the needs of families/caregivers within the community. For example, some respite programs may utilize an available bed in a health care facility or state institution for families who require extended respite options and whose child 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 (i.e., trained staff) or may be available to families through informal networks (e.g., parent cooperatives, or cash subsidies from states to purchase respite through relatives and friends). The following descriptions are examples of local respite program models.

In-home Models
Many families prefer respite that is provided in the home. There are several advantages to in-home respite:

• The child is most comfortable in the home setting and does not have to adjust to a different
environment.

• The parents/caregivers are often more comfortable if the child does not have to leave
the home.

• The home is already equipped for any special needs the child
may have.

• The cost is relatively economical (voucher systems are frequently used to pay for services).

Sometimes in-home care is coordinated by a broker, an individual who agrees to recruit, provides basic training, and keeps a database of all respite providers. Families can be matched with a provider by calling the broker and are usually responsible for child-specific training, payment, and repeat scheduling. Listed here are some of the typical models used in in-home respite.

Model 1: Home-based Services 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. 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 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: Parent-Trainer Services
This model is similar to having a friend or relative volunteer to care for a child 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. Providers may be paid or unpaid.

Out-of-home Models
Out-of-home respite provides an opportunity for children and youths with disabilities, chronic or terminal illnesses to be outside the home and/or with other children or youths. This may be a particularly attractive option for adolescents who are preparing to leave the family home for a more independent living arrangement, because it gives them an opportunity to experience new surroundings and different expectations.
Families are free to enjoy time in their own home without the constraints of constant care, and they can devote more
attention to siblings.

Listed below are some special considerations regarding out-of-home models.

• Transportation may be required and special equipment may need to be moved.

• Services are usually offered on a sliding fee schedule, or there may be a combination of family fees, state and federal funding, and/or private insurance.

• Providers may be paid or unpaid in many of the models.

• The child 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 child’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 home used only for respite stays. Offering respite in a provider’s home enables a child 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.

Model 5: Respite Family Day Care or Center-based Model Some respite programs contract with existing day care centers to provide respite to children with special needs. This is an effective model in rural areas, because it allows children to be in a supervised environment in a facility that may be relatively close to home.

Children may be placed in these settings on a short term “drop in” basis, as well. 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.

Model 6: Respite in Corporate Foster Home Settings
In some states, foster care regulations and licensing accommodate the development and operation of foster care “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 corporation operated foster 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 which is like semi-independent living.

Model 7: Residential Facilities
Some long-term residential care 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 institutions.

Model 8: Parent Cooperative Model
Parent 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 exchange program allows families to receive respite on scheduled
dates. In most parent cooperatives, fees are not assessed. This model has proven to be especially effective for families whose children 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 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. 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 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. Children can receive high quality care while remaining in a familiar setting with familiar people. In larger
communities, a hospital provides the sense of security parents and caregivers need when considering respite.

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. There are
many places around the country which offer such experiences, either as day or overnight camps.

Summary
Respite for families who have children with disabilities, chronic or terminal illnesses, may occur in out-of-home and in-home settings for various lengths of time depending on the needs of the family and available resources. As an important part of the continuum of services for families, respite helps preserve the family unit and supports family stability.

About the Author: Jennifer M. Cernoch, Ph.D., is the Director of the Texas Respite Resource Network and the ARCH Satellite Office in San Antonio, TX.

Respite for Children with Disabilities and Chronic or Terminal Illnesses Fact sheet produced by ARCH (Access to Respite Care and Help) National Resource Center, Revised March 1994.
http://www.archrespite.org/fs2.pdf

THE GOALS
The goals of Casa Colina’s Outdoor Adventure Recreation Program are:

• To enhance cognitive skills such as attention, memory, direction following and problem solving.

• To develop social skills such as working as a team, developing relationships with others and using communication skills.

• To enhance physical skills including mobility in challenging terrain, endurance and safety.

• To build self-esteem, independence and an overall feeling of well being.

Common Questions about Respite Care

Who Needs Respite Care?
If you answer “yes” to any of the following questions, your family may very well benefit from respite care services.

• Do I feel worn out from the extra responsibilities of care giving?

• Is it difficult to find temporary care for the person for whom I am the primary caregiver?

• Does care giving interfere with scheduling appointments or with personal projects?

• Does care giving substantially limit time I have for other family members?

• Do I avoid going out because I feel I would be imposing on family and friends if I ask them to provide care?

• Am I concerned about who would care for the person to whom I provide care in the event of a family emergency?

Who Provides Respite Services?
Respite services may be provided by chapters of national organizations such as the Brain Injury Association, The Arc, Easter Seal Society, by rehabilitation providers, and by home health agencies.

How Do You Access Respite Services?
Accessing services can be difficult, but not impossible.

• Contact your state or local Brain Injury Association, The Arc, Department of Mental Health and Mental Retardation, Department of Health, or local rehabilitation providers.

• Get the names of potential providers from hospital or home health care agency social workers or nurses.

• Ask members of support groups for information about respite services they have used or agencies they know that provide respite services.

How are Respite Services Funded?
Respite services may be publicly funded, funded by private insurance, or paid
out of pocket. Some providers charge fees on a sliding scale based on a family’s income. Most programs operate on a combination of funding sources.

Questions to Ask a Respite Care Provider

• How are care providers screened?

• What is the training level and level of experience of the care providers?

• How are care providers trained to meet specific family needs?

• How and by whom are the care providers supervised?

• What happens during the time the person with disability is receiving services? Are there organized activities? How are meals handled?

• Does the program maintain current information about the medical and other needs of the person receiving care?

• Is there a written care plan?

• Does the program provide transportation?

• What procedures does the program have for emergencies?

• Can the provider take care of multiple family members?

• Are the services monitored or licensed by an outside agency? If yes, by whom and how can they be contacted?

• Can caregivers meet and interview the people who provide care?

• How far ahead of time do caregivers need to arrange for services?

• Are families limited to a certain number of hours of services?

• What is the cost of services? How is payment arranged?

Portions of information for Common Questions and Questions to Ask taken from an article by Debby Ingram, Family Support Project, "Strengthening American Families Through National and Grassroots Support", The ARC website, http://thearc.org/faqs/respite.html
Exciting Respite Opportunity

Camps and recreation/adventure programs offer fun respite opportunities for persons with brain injury and their families. Local Brain Injury Associations often are able to provide information about these experiences. Here is an example of an innovative program with benefits that last long after the experience.

Exercising the RIGHT TO RISK
By Cheryl D. Fields, TeamRehab Report

Anne Morash Johnson is the founder and director of the Outdoor Adventure Recreation Program at Casa Colina Centers for Rehabilitation in Pomona, Calif. During the past seven years, she has led more than 200 people with brain injuries on high-risk adventures around the country in an effort to renew their self-esteem and rekindle their lust for life. Nearly half of the participants have gone more than once.

“I started the outdoor program because I saw a lack of community resources for people with brain injuries," says Johnson, R.T.R., C.T.R.S.

Outdoor recreation programs do exist for people with disabilities unrelated to brain injury. However, citing the other divisions of Casa Colina’s wheelchair sports program, Johnson notes these activities are frequently inaccessible to head-injured clients because they require a high level of cognitive ability.

Addressing the special needs of this overlooked population, the outdoor adventure program evolved at Casa Colina out of a socialization group for people with

brain injuries and their families. Today, the program includes downhill ski trips, deep sea fishing, snow shoeing, winter camping, horse packing and more. It is open to participants from across the country.

“A huge percentage of people who have brain injuries were risk takers before," Johnson says. “If we deny them the right to participate in risk activities, we’re denying them one of their human rights. I think it is very important for us as recreation professionals to see that
those kinds of programs are available."

The outdoor adventure experience has enabled many patients to overcome feelings of being helpless and powerless, Johnson says. It also has provided opportunities for them to apply skills learned during rehabilitation.

Johnson says an added benefit of the outdoor recreation program is that it helps primary caregivers and relatives become more comfortable with the person’s right to risk. Often the fear of further injury makes caregivers overly protective of their loved ones who have head injuries.

“When the individual can go to an environment like that and succeed, get around, be challenged and still have a good time, the family has a tendency to step back a little bit," Johnson says.

Some therapy sessions have become more productive for clients after these

trips because their sense of independence and self-confidence is renewed and because their family members are more willing to let them face new challenges, she adds.

While the program has occurred without incident for the past seven years, Johnson admits some people are still bothered by the elements of risk and danger involved.

“People misinterpret risk as danger, and there’s a very distinct difference between the two. I think risk is really positive." She acknowledges that there is an element of danger involved in her program, but believes that proper planning and staffing can mitigate these concerns.
“We do have people who go on trips who have seizures," Johnson says. However, because of advance planning and consultation with participants’ doctors and family members, her team has successfully handled these episodes.

“I feel very strongly that an individual should be able to participate whether they are seizure-free or not," she says. The trips are staffed by licensed nurses, therapists, and other professionals who volunteer their time.

Another way in which Johnson alleviates some of the danger is by using professional outfitters. She says safety is of the utmost importance, but so is maintaining the elements of risk. “If you took the risk away from it, it would no longer have the lifelong benefits that it has," she says.

Taking the Family Outdoors
Casa Colina’s annual Family Camp for people of all abilities can strengthen family bonds and assist patients in developing a sense of self-esteem and independence.

Part of Casa Colina’s Wheelchair Sports program, the camp is held at Camp Bluff Lake in Big Bear, Calif., a YMCA facility. The weekend-long program includes a variety of traditional camping activities such as boating, fishing, swimming, nature walks, crafts, folk dancing and camp fires, all of which are accessible to people with disabilities. It is designed to expose participants to the outdoors and to present them with new challenges.

The camp is staffed by volunteers and membersof the professional rehab team at Casa Colina. Past camps have been attended by as many as 450 participants.

“I wanted this camp to be a real challenge," says Anne Morash Johnson, a recreational therapist and founder of the program. She says participants welcome the challenge of getting around in rough terrain and exploring a natural environment. Family members are often surprised to discover what their loved ones can do, despite disabilities.

Getting Started
Johnson encourages other therapists to consider starting an outdoor adventure program or family camp. Casa Colina’s program began with a mailing, describing what the program was about and testing interest among prospective participants. Referrals took over once the trips began. Today the mailing list includes more than 450 people who’ve either attended previous trips or expressed interest.

While it was originally designed for people with brain injuries, Johnson’s goal is for the program to become an integrated experience to include people of all disabilities, their caregivers and family members. Previously, Casa Colina has paid for the program through its administrative budget. This year, Johnson hopes to raise funds through community organizations and other philanthropic agencies. The fund-raising goal for the 1991-92 program is $12,000, which is to cover planning expenses, the administrative costs of running the trips and staffing them with two professionals.

Despite Johnson’s efforts to include anyone who is interested and physically up to the challenge, the average cost of attending an excursion is between $200 and $400 a person. Participants must pay their own way. Her goal for this year is to increase the program’s resources so that people are not excluded because they don’t have the money to participate.

Originally published in TeamRehab Report
Attribution to WheelchairNet Project.

http://www.wheelchairnet.org/WCN_ProdServ/Docs/TeamRehab/TRRArchive.html

THE BENEFITS OF RESPITE CARE
The benefits of respite services are as numerous as the persons that use them.
Here are a few:

Families/Caregivers

• Provides time for rest and relaxation

• Allows families to engage in daily activities thus decreasing feelings of isolation

• Improves family’s ability to cope with daily responsibilities

• Helps prevent burnout, stress, and fatigue

• Revitalizes, resulting in improved ability to provide care

• Helps preserve the family unit by decreasing the pressures that contribute to divorce, institutionalization, abuse and/or neglect

Persons with Disabilities

• Provides opportunities to build new relationships

• Enhances development of individual identities

• Enriches growth and development

• Promotes greater independence

• Offers exposure to new activities

• Encourages development of new interests and skills

• Provides a change in daily routine

Portions of information were taken with permission from “Respite Care” written by Debby Ingram, Research Associate, Family Support Project, Strengthening American Families Through National and Grassroots Support, found at The ARC website http://thearc.org/faqs/respite.html and from “Respite for Children with Disabilities and Chronic or Terminal Illnesses” from ARCH National Resource Center found at http://www.archrespite.org/fs2.

..............................

Premier Outlook is a publication of ResCare Premier. The views and opinions expressed in this publication, outside of the editorial and the About us…. sections, are not necessarily the views and opinions of the publisher and staff of Premier Outlook. The materials presented herein are a service and for information purposes only. We have not screened each individual or organization that appears in this publication. The appearance of an individual or organization in this publication is not intended as an endorsement. We urge all readers of this publication to conduct their own investigation of the products and services identified herein. Premier Outlook reserves the right to refuse or edit articles and publications submitted for consideration. If you would like to comment on our publication, inform us of mistakes or dead links, or suggest relevant links or topics, we would be pleased to hear from you at: editor@premieroutlook.com.

Permission to duplicate, reprint, or electronically reproduce any document in part or in its entirety may be obtained by written consent from the editors.

Copyright © 2002 Premier Outlook. All rights reserved