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It is estimated that 10 to 15% of children
within the United States have a chronic health condition, with
about 1 million of these children having costly and disabling
conditions (General Accounting Office, 1989). In addition, it is
estimated that approximately 17,000 to 100,000 children are
technology-dependent (Office of Technology Assessment, 1987). For
years, these children, dependent on technology and medical
intervention services, lived in hospital settings for the
duration of their lives. Because of concerns for high hospital
costs on a continued basis or long-term care costs for
institutional settings and the humane interest for returning
children to the nurturing environment of their families, these
children are now living at home in communities all across the
country. Thus, the need for community-based support services for
these families has increased immensely.
A wide array of support services are needed by
families to maintain their child with disabilities at home. In
1980, respite care was the most requested service of families
caring for children with disabilities at home (Cohen &
Warren, 1985). Families caring for children who are medically
fragile also have this same need for respite care, which at
times, may be critical for the long-term stability of the family
and child at home.
Many existing respite care programs have been
reluctant to care for children who are medically fragile due to
the tenuous nature of the medical conditions of these children.
However, in recent years, a limited number of respite care
services, specifically designed to care for children with medical
needs, have emerged as a support option for families. These
services have proved to be beneficial from the families’
perspective and also from a cost containment perspective as
compared to continuous hospital stays or long-term institutional
care. Governmental entities, community programs, hospitals, and
private insurance companies are realizing the importance of
community-based respite options for families as more and more
children survive due to their dependency on medical technologies.
It is with this movement, that many states and communities are
looking towards establishing respite options for families of
children who are medically fragile.
Respite Program Options:
General Partnerships &
Resources
Two of the primary barriers from parental
report of respite options for children who are medically fragile
are: 1) respite services for families of children with severe
medical conditions are unavailable; and 2) if respite options are
available for families of children who are medically fragile,
they are usually too expensive for families and many times, the
respite providers are not adequately trained to meet the intense
needs of the child. Because of these barriers, many states,
governmental agencies, and community providers have developed
various options for respite support services for families of
children who are medically fragile through partnership programs.
These may include the following:
1) Many states have developed family support
legislation which includes appropriations at the state level for
support options. This may include an entitlement program in which
a family is entitled to a certain amount of respite care services
per year sponsored by the state or a voucher method in which
families receive funds to purchase respite services from
community providers or through informal support networks. These
community providers may include home health care agencies,
respite programs equipped to handle children with medical needs,
or family friends and neighbors who have been trained by the
family. This allows families’ choice in their providers and
strengthens informal networks for families when more established
programs are not available. The partnership between the family,
state and community has proven to be very effective in
maintaining children with medical needs in the community.
2) Many governmental programs have developed
funding streams to encourage a partnership between federal and
state governments to provide support services to families. These
services include the following:
a. Title V: Services to Children
with Special Health Needs under the Maternal and Child Health
Block Grant (Part 2 of the Social Security Act), formerly
known as state Crippled Children’s Services, offers in
many states in-home nursing care, home care, and respite care
for families of children with chronic illnesses and medical
needs.
b. Title XIX: Medicaid -
Traditionally Medicaid (federal dollars are provided as a
match to state dollars) services have included the payment
for medical services for individuals who are financially and
medically needy. With recent changes at the federal level,
states have been given considerable flexibility in the type
of services offered on a statewide level. The Early and
Periodic Screening Diagnosis and Treatment Program (EPSDT) of
Medicaid allows states to offer up to 32 additional services
including home care or in-home nursing care for children with
complex medical needs and home respiratory care for children
who are ventilator-dependent. These generic support services
allow the families to receive respite. In addition, Medicaid
allows waiver options at the state level for home and
community-based services. For example, the Medicaid 2176 Home
and Community-Based Waivers, available to states for the
funding of a variety of home and community support services,
is one program that is capable of bringing relief to many
families of children with complex medical needs by paying for
respite services. Medicaid also offers Model Waivers to
states to provide in-home nursing care and out-of-home
respite care to families of children with complex medical
needs who would reside in a hospital setting or long-term
care setting if such waiver services were not available.
c. Title XX: Social Services Block
Grants has many programs available based on income and
disability eligibility of families and children. Services
offered under this federal program are state specific and can
often provide short-term in-home support services for
families of children who are medically fragile.
3) Many community hospitals have realized the
importance of support services and respite care for families of
children who are medically fragile and have developed
community-based programs through a partnership with community,
state, federal, and private funds. These community-based programs
may include hospital-based respite programs, home care for
children who are ventilator-dependent, out-patient and care
coordination services for home care, medical respite houses, and
transitional hospitals in which programs and staff are focused on
the long-term needs of the child and family rather than on
traditional acute-care hospital services. Hospitals have become
very creative in funding these services through private insurance
(cost containment factors), private and community support (United
Way, fraternal organizations), and state and federal funds
through offering a wide array of medical and support services.
4) Many community agencies have also realized
the needs of families of children who are medically fragile and
have developed such services as medical foster care, medical day
care services, foster care programs for children who are HIV
infected, permanency planning in adoption services, medical
respite houses, and care coordination services. On average, these
community-based services cost one-third of the cost of in-patient
hospital stays based on a daily per diem rate. Besides the cost
factors, community agencies have found decreases in re-admissions
to hospitals of children and decreases in family stress levels
due to the availability of community-based support and respite
services. Like hospitals, community agencies have become creative
in funding these services through private insurance, community
funds, and state and federal funds.
Program Considerations
Establishing a respite program for families of
children who are medically fragile can be a challenging and
rewarding experience. Community service agencies interested in
starting respite services must learn new skills such as medical
terminology, medical management, sharing roles, and developing
cooperative relationships with a wide variety of
co-collaborators, including family members. In addition, these
agencies must develop strategies that will ensure quality
services at affordable costs. The following program variables
need to be considered in establishing a respite program for
families of children who are medically fragile:
Community & Family Needs Assessment
The first step in establishing a respite
program for families of children who are medically fragile is to
conduct community research regarding the needs of families (i.e.,
the number of families needing respite services, the type of
services families want - in-home or out-of-home, financial
structure of families, etc.), current community resources that
are available to families, and the feasibility of collaboration
and coordination with existing services in the community. For a
successful respite program, it is imperative that family input
into the design and structure of the program be solicited. For
example, many families of children who are medically fragile feel
more comfortable using respite services that are available in
licensed medical facilities (i.e., hospitals, medical day care
centers) where emergency response systems are established.
Families have also reported that out-of-home respite allows them
to sleep comfortably for short periods of time so that they can
regain their stamina to meet the intense medical needs of their
child once that child is at home. Having a licensed respite
provider come into their home may not allow families the privacy
to regain their sleep. A small variable such as this can be a
deciding factor for a family to utilize respite services.
Licensing & Standards
Once a program structure is developed, it is
critical for the agency or hospital developing the respite
service to check state licensing requirements for facility use,
staffing, training, health standards, and medical collaboration.
Each state varies on the licensing requirements of in-home
providers and facility-based services. In some states, only
licensed personnel (i.e., nurses) are allowed to administer
medications or perform health related tasks whereas, other states
have made allowances under their health services code to allow
trained, but unlicensed, respite providers to administer on-going
medications and perform some basic health related tasks. The
involvement of licensed personnel within the respite program
structure will depend on the licensing standards of the state and
the level of care needs of the child being served in the respite
program.
Staffing
Staffing of a respite care program for families
of children who are medically fragile will depend on the
following conditions: 1) type of respite program structure -
in-home or out-of-home. In an in-home program, staffing ratios
are usually one to one with trained and/or licensed personnel
performing the respite services depending on the standards of the
state. In an out-of-home respite program such as a hospital-based
service, staffing ratios can range from one to one to one to
three. 2) level of care needs of the child who is medically
fragile. Some children will require a one to one ratio because of
the medical technologies that are required and other children may
not require a sole provider. 3) standards of care as outlined in
state licensing requirements. Some states require staffing in a
respite episode to be one to one for children who are medically
fragile.
Training
Training is a critical component of any respite
care program and must adhere to the state licensing requirements.
In addition, training in a medical respite program must encompass
a broader scope of skill levels to accommodate the intense needs
of these children. For example, respite providers need to be
trained in such areas as administration of medications, medical
terminology, medical management, use of medical and specialized
equipment, use of cardiopulmonary resuscitation, and universal
health and safety standards. Also, respite providers must be
trained in addressing sensitivity issues of the family who many
times feels guilty. Additional areas of training include
collaboration with medical personnel and emergency procedures.
Families need to be an integral part of the training process as
they understand their child’s needs better than anyone. The
involvement of families in training also conveys a "sense of
security" for families that the provider understands the
intense needs of their child and has empathy towards the family
situation.
Medical Services and Collaboration
Medical respite programs must also include
direct physician and/or nursing collaboration in the care of
children who are medically fragile. Some respite programs require
direct physician orders for certain health related tasks while
other programs require direct contact with the physician before a
respite episode will take place. In either situation, respite
providers must work in conjunction with medical and/or nursing
staff in charting medical services and in performing certain
medical tasks. Most medical respite programs require an initial
medical exam and assessment before the family receives the
service.
Providing respite care services to families of
children who are medically fragile has proven to be a cost
effective means of keeping families together and decreasing
hospital stays and re-admissions for children. In addition,
medical respite services have also been beneficial to communities
in supporting families and in untapping valuable resources for
the benefit of children in need. The challenges presented by
increased use of medical technology are being widely accepted by
community agencies in the development of respite options for
families of children who are medically fragile.
Innovative Community-Based Respite Support Programs
The Respite Station
Santa Rosa Children’s Hospital
P.O. Box 7330/519 W. Houston
San Antonio, Texas 78207-3198
Prescribed Pediatric Extended Care, Inc.
12402 N. 56th Street
Tampa, Florida 33617
Pediatric AIDS Respite Program
New York Hospital/Cornell Medical Center
525 E. 68th Street F134
New York, New York 10021
Cradles & Crayons
Specialized Day Care
1711 Broadway
Kansas City, Missouri 64108
Pediatric Transitional Care Program
La Rabida Children’s Hospital and Research Center
East 65th Street at Lake Michigan
Chicago, Illinois 60649
Cohen, S., & Warren, R.D. (1985). Respite
Care: Principles, Programs and Policies. Austin, TX: Pro-Ed,
Inc. (Available from Pro-Ed, Inc., 8700 Shoal Creek Blvd.,
Austin, TX 78758).
General Accounting Office. (1989). Health
care: Home care experiences of families with chronically ill
children. (GAO/HRD-89-73). Washington, D.C.
Hochstadt, N.J., & Yost, D.M. (1991). The
Medically Complex Child. New York: Harwood Academic
Publishers. (Available from Harwood Academic Publishers, P.O. Box
786, Cooper Station, New York, NY 10276).
Office of Technology Assessment, U.S. Congress.
(1987). Technology-Dependent Children: Hospital v. Home Care -
A Technical Memorandum. (Office of Technology
Assessment-TM-H-38). Washington, D.C.: U.S. Government Printing
Office.
SKIP of New York (SICK Kids Need Involved People)
213 West 35th Street, 11th Floor
New York, NY 10001
(212) 268-5999
Association for the Care of Children’s
Health (ACCH)
7910 Woodmont Avenue, Suite 300
Bethesda, MD 20814
Children’s Defense Fund
122 C Street, N.W., Suite 400
Washington, D.C. 20001
Federation for Children with Special Needs
95 Berkeley, Suite 104
Boston, MA 02116
About the author: Jennifer Cernoch,
Ph.D., is the Director of the Texas Respite Resource Network and
the ARCH Satellite Office in San Antonio, TX.
ARCH Factsheet Number 11, May,
1992
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