timebanks respite care proposal4psn

8/7/2019 timebanks respite care proposal4psn

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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]
mailto:[email protected]:[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.

Community-Based Respite 1


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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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