The Open Society Mental Health Initiative

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Respite Care

 

Respite care, or ‘short breaks' as it is referred to in the UK, is short-term, temporary care provided for people with disabilities and their caregivers. Respite care may be planned or emergency short-term relief. It aims to provide caregivers with a break from their responsibilities, while providing a positive experience for the person with a disability. Respite care is an important part of the range of services supporting families that have a member with disabilities. Short breaks also help to combat the isolation, which children and adults with disabilities may feel, and enables them to meet new people, widen their social life and gain new experiences. Respite care is crucial in helping to reduce family stress, preserve the family unit and provide stability. Respite care can also play a very important role in the prevention of institutionalization.

 

Key principles:

 

Family-centeredness
Respite care is most effectively provided within a family-centered framework. Strong parental and other family member involvement in respite service development ensures that the resulting services are tailor made. 

 

Tailored to individual needs
In the course of providing respite care service, each person with a disability and their family should be treated individually, with their unique strengths and needs acknowledged.  The type of respite needed should be identified by matching the need to the services currently available, or by using this information to develop services where none exist.

 

Flexibility
Respite care services should be flexible and responsive to the individual and their family as well as to their changing needs. To this end, a comprehensive set of services should be provided which include both in-home, as well as out-of-home services.

 

Accessibility
Respite care services should be accessible to families that need it geographically and/or financially.

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Types of respite care services

 

1. Home-based services
Home-based respite services may be provided by a substitute caregiver who provides assistance to the person with disability in the absence of the parent or caregiver in the person's home. Ideally, such services should be available twenty-four hours a day, 365 days per year. Home-based respite may be offered by individuals who are trained in caring for people with disabilities. Sometimes home-based services are provided by a friend or relative who has been identified or selected by the family and trained by a respite program.


2. Out-of-Home Services
Out-of-home respite care provides an opportunity for people with disabilities to be outside their home. This way, families are free to enjoy time in their own home without the constraints of constant care, they can "recharge their batteries", and devote more attention to siblings.


3. Family Care Homes or Host Family Model
In this model, respite is offered in the service provider's home. This could be the home of a staff person of 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 care in a provider's home enables the disabled person to receive services in a more familiar setting.


4. Respite Family Day Care or Center-based Model
Some respite programs contract with existing day care centers to provide respite to people with disabilities. This is an effective model in rural areas, because it allows people to be in a supervised environment in a facility that may be relatively close to home. People may be placed in these settings on a short term "drop in" basis, as well.


5. Camps
Camp has been a form of respite for many families for many years. For children with disabilities, the chance to participate in a camp can be life-expanding. Some camps offer daily programs, while others are overnight camps.


6. Community and Leisure Activities

Community and Leisure Activities refer to a range of organized group activities which may include play schemes, clubs, after-school activities, etc. These may be specifically organized for people with disabilities or include their non-disabled peers or siblings.


7. Respite in Corporate Foster Home Settings
In some states of the US, 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 corporate run 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 semi independent living.


8.  Parent Cooperative Model

Parent cooperatives have been developed in communities, especially rural areas, where respite services are very limited. In this model, families of children with disabilities develop an informal association and "trade" respite services with each other. This exchange program allows families to receive respite on scheduled dates. This model has proven to be especially effective for families whose children have similar disabilities.


9. Residential Short Break

Respite care can also be provided in residential settings outside of the family home. These schemes provide a valuable alternative for both parents and children and young people with disabilities who may prefer a short term residential break rather then family-based services.

 

In this section of the website you will find information on respite care for people with intellectual disabilities and their families, links to best practices, publications and reports, and other useful links.

 

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Highlights

1) Dumping Grounds For Forgotten People

An investigation by Bulgarian journalist Yana Buhrer Tavanier on the mental care institutions in Bulgaria, Romania and Serbia.   

Please visit the website dedicated to the investigation and view the new promotional video.


Judith Klein, director of the OSMHI (Open Society Mental Health Initiative) has written a foreword to the article, which appears in the newsletter of the European Coalition for Community Living, Issue No. 10, October 2009 and also on the investigation website.


2) Report of the Ad Hoc Expert Group on the Transition from Institutional to Community-based Care

A report on the Transition from Institutional to Community-based Care was handed over to Commissioner Vladimír ?pidla on September 23, 2009. The report was drafted by a group of independent experts convened by Commissioner Spidla in February 2009 to address the issues of institutional care reform in their complexity.  The report is also available in Bulgarian, Croatian, Hungarian, Romanian.

Films

Karin Dom - a training and resource centre for children with special needs and their families

This short film was made following a BBC production about a children's institution in Mogilino, Bulgaria. The film features MHI partner organization Karin Dom and highlights what community-based alternatives for children can be like in Bulgaria.

UN Disability Convention

The Convention on the Rights of Persons with Disabilities received its 20th ratification on April 3, 2008, triggering the entry into force of the Convention and its Optional Protocol on May 3, 2008. This marks a major milestone in the effort to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms of persons with disabilities, and to promote respect for their inherent dignity.

Information on the convention process:
Convention in Easy to Read
View the list of signatories
Countries that have ratified the Convention
ICRPD Ratification Toolkit
Convention and Inclusive Education
View more information

 

News reports on the Convention:
Agreement on New UN Convention
Urging Implementation
Archive Webcast: Convention Signing 
Record Number of Countries Sign
Secretary-General Ban Hails Entry Into Force Of Treaty On Disability Rights
More news reports

Publications:
UN Handbook for Parliamentarians on the Convention on the Rights of Persons with Disabilities and its Optional Protocol
First Implementation Manual For The United Nations Convention On The Rights Of Persons With Disabilities (Addressed Specifically To Users And Survivors Of Psychiatry)


Ratify Now (The campaign to support global grassroots efforts to ratify the Convention on the Rights of Persons with Disabilities).

Films about Inclusion

Foster Care for Children with Disabilities: English ** Russian

I Want to Work and I Can Work!

Living Proof: The right to live in the community

Reality - film on personal assistance

Being an Unperson. A short film about the experience of dehumanization within the care system.

In My Language. A short film about autism and nonverbal communication.

A Way of Describing Autism. A short film by Dave Spicer and Amanda Baggs.

Equalise It!

A Manifesto for Disability Equality in Development Cooperation

The international committee of UK Disabled People's Council (formerly BCODP) has written this manifesto in the light of the signing of the UN Convention on the Human Rights of Persons with Disabilities. 

To read the campaign launch letter, please click here.

Organisations who wish to sign up to the Manifesto are asked to contact Bill Albert or Mark Harrison so that their name and logo can be added to the list of signatories.