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Creating a Community-Based
Respite Program for At-Risk
Famil ies via Timebanks
Prepared for: Parent Support Network
Prepared by: Laurie Tapozada
March 3, 2009
Laurie Tapozada C: 401 440-7551 Work Email [email protected]
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Executive Summary
Objective
To create a community-based respite program for families raising children with special needs,
including mental health challenges. The respite will be provided on a volunteer exchange basis,
using Timebanks as the conceptual framework, delivery vehicle and database.
Goals
The goals of the program are to:
Provide stress relief to the primary caregivers of children with special needs.
Provide time in which parents can tend to their own needs, or the needs of their other children
Reduce the incidence of abuse or neglect
Create an expanded natural network for both child and family
Provide a fun and nurturing break for the child, and one-on-one time with the caregiver
Prevent out of home placements of children with special needs
Promote permanency by reducing barriers to adoption and recidivism
Evidence Base
There is ample research based evidence that implementing a respite program can save money,
heartache and the disruption of families. Studies show that providing respite to families caring for
children with serious emotional disturbance can reduce the stress of the caregivers, and tension in
the family. Perhaps most importantly, the use of respite can reduce the incidence of abuse and
neglect, and prevent out of home placements of children who have serious emotional disturbance.
Providing respite can overcome barriers to adoption and reduce recidivism.
TimebanksThe basic concept at the heart of time banking is that a person earns one time dollar for every hour
spent doing something for somebody else in the community. Time dollars can be spent on any
service offered by a participating community member. with the right wraparound supports from an
agency, the Timebanks model can be very effective in building natural networks.
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Introduction
Raising a child with special needs can be a roller coaster ride, filled with highs and lows. Meeting
the needs of the child can be challenging, and even exhausting, depleting the emotional reserves
of the caregivers. A child with special needs may not be able to successfully participate in ordinary
childhood activities, such as after school programs, sports programs, or other activities at the Y or
in the community. It may not be possible to have visits at the friends house, sleepovers, or
unsupervised play in the back yard. Because of this, many parents of a child with special needs do
not get the natural respites that other parents may have access to. In addition, children with mental
health challenges can be quite intense, and require a level of monitoring that can be stressful.
Children with serious emotional disturbance cannot be left with just any babysitter, in order for the
parents to get a break.
Caring for a child with serious emotional disturbance over time, while rewarding in many ways, can
raise stress to dangerous levels. These families may become at risk for neglect or abuse, or out of
home placements for the child. In foster families caring for these children, it is just as important to
have access to support and respite. For families that do not receive the necessary supports, this
can lead to a disruption of the placement. The same holds true in adoptive families. Lack of
support and access to respite can also lead to disruptions and even possible dissolution of the
adoption.
Receiving respite can help these families to reduce stress levels, and prevent out of home
placements, as well as disruptions in foster and adoptive placements.
What is Respite?
Respite is defined as the temporary relief for primary caregivers of children with serious emotional
disturbance. Respite services provide short-term care to children and adults with special needs,
chronic illnesses, or those at risk of abuse and neglect.
There are two types of respite: Planned and Crisis. Planned respite is scheduled short-term care.
Crisis respite is emergency care.
Does Using Respite Work?
There is substantial research evidence that shows that providing quality respite can reduce the
stress of caregivers, and reduce or prevent the out of home placement of children with serious
emotional disturbance. For at risk families, using respite can also decrease the incidence of abuse
or neglect.
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A controlled, longitudinal study of adoptive families caring for children with emotional behavioral
disorder (EBD) demonstrated significant benefits from respite care. The families caring for a child
with EBD who received respite had better outcomes than comparison families, including fewer out-
of-home placements and reductions in caregiving stress. (Adopt USA)
Studies in Vermont indicated that families whose child received respite services said that they were
more optimistic about caring for their child in the future. They reported a reduction in stress for
both the family and the child, and an improvement in family relations. Families in Vermont called
respite their top need. (Bazelon-Briefs)
A study of Iowa crisis care respite programs indicated a 13% decrease in the reported incidence of
child abuse in the initial four pilot counties after the program's implementation. An evaluation of the
Iowa Respite Child Care Project for families parenting a child with developmental disabilities found
that when respite care is used by the families there is a statistically significant decrease in foster
care placement. (National Respite Coalition)
In another study it was shown that families caring for a child with emotional and behavioral distur-
bance experienced significantly better outcomes than did families in a comparison group who did
not receive respiteOutcomes included:
Fewer out of home placements
Greater optimism about caring for the child at home
Reductions in caregiver stress
Lower incidence of negative behaviors expressed in the community
It is clear that the use of effective respite services can prevent the abuse, neglect and possible
removal from the home of the child with special needs.
Why Timebanks?
Timebanks is built upon the concept of building a community of members who support one
another through providing and receiving services. Using the Timebanks community building
concept, and the timebanks database as a service delivery vehicle, makes perfect sense. Families
parenting a child with serious emotional disturbance sometimes can become isolated, due to their
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inability to participate in many community events. These families need a community, and need to
know that there are other parents out there experiencing the same challenges, and the same
feelings of stress and frustration.
There can be psychological barriers for a family to use respite that is provided by service agencies.
Families may fear being judged, or being blamed for the childs behaviors. Families may also fear
that there will be a perception that they cannot care for their children, or that they are
failures. (there is a research reference for this also, but I cant put my hands on it at the moment)
Receiving respite from caring members of the community, especially from members who may
already be part of their natural network, can be much less threatening.
In order to effectively match, monitor and support families receiving respite, it is essential to have a
database. Timebanks provides that database. In addition, to have a quality program, it is essential
to have a dedicated resource person to assist with the matching, support the ongoing
relationships, monitor and train respite providers.
Training of Respite Providers
Due to the challenging nature of the behaviors of children with serious emotional disturbance, as
well as the privacy and respect needs of the family, it is critical to provide professional training to
respite providers. At a minimum training should provide:
A program overview
A clear understanding of what respite is and is not, as well as the role of the respite
provider
An understanding of serious emotional disturbance, including impact of trauma such as
abuse or neglect
A framework for understanding the unique needs of the child and family
The ability to connect with the child and to manage challenging behaviors
First aid and safety certification
An understanding of confidentiality, ethics and respect of privacy
A knowledge of mandatory reporting laws
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It would be very beneficial to have the families participate in the training, as well as the respite
providers.
Proposed Training Curriculum
Module Audience Duration Materials to be Developed
Program Overview All 1 hour Roadmap
1. What is Respite?
Definition-typesWhy-BenefitsWho-Families, Roles and Re-sponsibilitiesWhere-In-home and outWhen-emergency and planned
Family
Provider
1 hour Slides
Trainer ManualParticipant ManualExercise Materials
2. Child Friendly Respite Identifying natural supports Preparing the child Addressing barriers Making respite fun
All 1 hour SlidesTrainer ManualParticipant ManualExercise Materials
2. Partnering with FamiliesGetting to know each otherFamily and Child ProfilesRespite Provider ProfileReport Back proceduresInterview structure
Family
Child
Provider
2 hours SlidesTrainer ManualParticipant ManualFamily Booklet
Interview GuideChild BookletRespite Provider Booklet
3. Understanding Special NeedsPhysical/CognitiveEmotional/Behavioral
Impact of Trauma
Family Op-tional
Provider
2 hours SlidesTrainer ManualParticipant Manual
Exercise Materials4. Working with BehaviorsPrevention of escalationUsing activitiesbehavior management principles
Family Op-tional
Provider
2 hours SlidesTrainer ManualParticipant ManualExercise Materials
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Module Audience Duration Materials to be Developed
5. Ethics and ConfidentialityClient RightsDCYF Reporting Requirementsfor Child Abuse and NeglectConfidentiality
Family if notfoster family
Provider
1 hour SlidesTrainer ManualParticipant Manual
Exercise MaterialsConfidentiality FormClient Rights Form
6. Basic First Aid and Home
Safety
Provider ? First Aid and Home Safety
Booklet (pre-existing?)
7. TimebanksObtaining Respite ThroughCommunity Networks
FamilyProvider
2 hours Brochure (existing)SlidesTrainer ManualParticipant Manual
Exercise MaterialsJob Aid (walk throughregistering themselvesonline
8. Interview 1 hour Interview guide
9. In-Home Meeting 3 hours We need to discuss this-whoneeds to do practicum? whatdoes it consist of? How do wegrade it? can we consider it aget to know you meeting ifprovider is unknown?
Program curriculums that were consulted include:
- Rhode Island Parent Support Network Statewide Respite Training Curriculum
- Vermont Federation of Families for Childrens Mental Health Respite Curriculum
- REST A BIT Respite Training Curriculum- Taking a Break, the ADOPT US KIDS Respite Training Curriculum
- RI Center for Child and Family Health (DHS) recommended training components for respite
providers
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Characteristics of an Effective Program
In a national study conducted by the Atlanta State Office of Evaluation and Inspections, there were
found to be some common characteristics of effective respite programs for foster families.
The programs selected were a mix of private and public programs and offered a variety of services
using a variety of methodologies. They were scattered around the United States. Although the
programs differed in many ways, the characteristics that were found to be common among them
include:
The programs were established to meet a specific need
Each program was affiliated with an organization that served the target population
All programs promoted teamwork and trust
Each program screened, trained and monitored respite providers
Programs ad increases in the number of families served and number of respite providers over
time
All had clear policies and procedures
Programs produced decreases in turnover of foster parents and number of disruptions in
placements of children
Each program was flexible to meet changing needs
All programs received Federal and/or State financial support
In another study conducted by the Childrens Bureau, a US Department of Health and Human
Services, the most promising practices of respite programs were found to be that they were:
family driven, family centered and built on family strengths
community based
flexibly funded
designed to normalize activities for children culturally competent
collaborative across systems and organizations
accessible
committed to training
outcome oriented
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In designing our program, we should incorporate all of these elements.
Program Challenges
In a review of respite programs completed by ADOPT US KIDS, there were some challenges
identified. Those challenges include:
Overcoming barriers to families utilizing the services they need
Lack of a needs assessment, to target services accurately
Ensuring compliance with state regulations Ensuring strong program management
Implementing a rigorous evaluation process
In addition it was pointed out that having shared leadership is important, as any program that is
overly dependent on one or two leaders risks failure if the leaders can no longer lead. Having
programs that depend on solely volunteer coordinators was also seen as somewhat risky for the
sustainability of the program.
Partnering with Multiple Agencies
Because the program will serve biological families, foster families and adoptive families, it will
increase our chances of success if we partner with the agencies that serve each of those
populations. The Parent Support Network serves families caring for children with mental health
challenges, and who may be at risk for out of home placements for their children. The RI Foster
Parent Association supports foster families. Adoption RI recruits and supports adoptive families.
Current State of Respite in RI
In RI, there is varying availability of quality respite services. In terms of need, there is a definite lack
of services. For foster families, respite is sometimes available through the agency they are workingwith. Most private agencies use licensed foster families to provide respite to families who request
respite. For families licensed through DCYF, it is not always easy to get access to quality respite.
There are rules and guidelines for being able to access respite.* For biological and adoptive families
struggling with the care of children with significant health or behavioral challenges, it can be even
more difficult to obtain respite. For children who meet the Medicaid criteria, respite is provided
through certain specialized agencies and there is a limit and a structure to the process.* There are
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often long waiting lists for families requesting respite. The full scope of unmet need for respite
services across these populations needs to be determined with research.
Potential Cost Savings from Implementing a Respite Program in RI
As discussed earlier, there is research-based evidence that access to quality respite can prevent or
reduce abuse, neglect and out of home placements. Respite can also reduce placement instability
in foster placements, and adoption disruptions. The savings in human suffering is clear. It is more
difficult to pinpoint the exact cost savings of implementing a quality respite program.
Prevention of Out-of-Home Placements
A typical out of home placement for children with mental health challenges can be as much as
$100,000 dollars or more per year, as these children usually end up in residential placements, or
higher end group homes. Group home care can average approximately 60-70 thousand dollars per
year. Treatment foster care is a much better and more cost effective placement at approximately
$40,000 per year, but there is a chronic shortage of such treatment homes in RI.
The cost of a residential placement are not the only costs involved. For foster family disruptions,
another family must be recruited and licensed, at a cost of approximately $2500 dollars per family.The same is true of adoptive family disruptions. So in addition to the damage being done to
children and their families, the costs of out of home placement and placement disruptions can be
significant.
Each year there are approximately three thousand kids who are in out of home placements. For
biological families experiencing multiple stressors as well as caring for children with mental health
challenges, respite can mean being able to continue caring for the child at home. If we can reduce
the number of children entering state care by providing respite to caregivers by even five percent,
that translates into 150 children, and depending on the paths they take through the system,significant cost savings.
Reduce Adoption Disruptions and Dissolutions
RI does not track statistics around adoption disruptions and dissolutions. At the national level,
adoption disruptions of children younger than age 14 average between 8-10%. For children being
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adopted aged 14 or older, there is an average disruption rate of 25%!!! Once adoptions are
finalized, the dissolution rate tends to average approximately 3% across the board.
In RI, we average approximately 250 adoptions per year. How many adoptions disrupt before they
are finalized? If we apply national statistics to RI, then approximately twenty-five adoptions disrupt
prior to legalization each year. This figure would be closer to sixty disruptions if the adoptions are
with teens. If access to respite can save even one adoptive family, there would be a cost savings of
approximately $100,000 (cost of placement, plus support costs of social workers, CASA workers,
educational advocates, agency personnel and others on a childs support team) each subsequentyear, until the age of majority. Saving one family. adopting a 12 year old, can easily save the state
more than half a million dollars.
Reducing Placement Instability
For children in state care, placement instability, defined as three or more placements, is all too
common. Sixteen to sixty-four percent of kids in state care, depending on length of time they have
been in the system, have experienced three or more placements. Placements can end for many
reasons, but for those that end because of challenging behaviors, respite and community support
may have been able to stabilize the placement, again leading to significant savings.
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Proposed Program Overview
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