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NGO Spotlight Promoting the Best Care at the Best Source – the Home

By Maria Dolbunova, General Director, Keystone Foundation for Children and Families

The Keystone Foundation for Social Assistance to Children and Families (KFCF) is a Russian NGO founded by KHS International, a subsidiary of Keystone Human Services (KHS). Registered as a Russian NGO in April 2006, Keystone Foundation (KFCF) was established to promote and develop opportunities in the form of direct service, best-practice training, grant-making, foundation services, and administrative support to further the independence of children and families who are in need of assistance due to disabling conditions, poverty, abandonment, institutionalization, and other adverse conditions throughout the Russian Federation.

The parent organization, KHS, is based in Harrisburg, Pennsylvania, and for over thirtyfive years it has been serving individuals with autism, intellectual disabilities, physical disabilities, and mental illness, as well as providing educational services and support for children, adults, and families. With no religious or political affiliation, KHS works within diverse cultures in the United States, Moldova, and Russia. It also operates extensive international internship and professional-exchange programs to facilitate the exchange of knowledge and the building of partnerships. For the past three years, KHS has received a grant from the Open World Program of the U.S. Library of Congress, making it possible for Russian delegates to go to the United States to visit Keystone programs and learn about the organization's community-based system of care. Delegates also visit other community organizations and meet with representatives of local and state governments. Two other professional exchange opportunities, the International Trade Administration's three-month Special American Business Internship Training (SABIT) program and Keystone's own eighteen-month International Practical Training Program have provided opportunities for young professionals in the field of community-based services to learn about the Keystone model.

A Network to Support and Train the Most Effective Advocates

It is unfortunately true that the majority of severely disabled people in Russia are still institutionalized from the time of birth. Children with less severe disabilities can remain at home with their families, but are often kept "hidden," isolated from the community, and are routinely denied access to education. Their families likewise are cut off: They lack the support networks of other families with children with disabilities. We believe that to facilitate change, the place to begin is with the families themselves. Parents and their children, if allowed to grow up in society, will become the biggest advocates for the rights of the disabled.

Our strengthened professional relationship with Russian colleagues reinforces our commitment to facilitating changes in legislation and society in order to create social and medical support programs that would allow parents to raise their children at home rather than giving them over to orphanages and other institutions. We believe that protecting the human rights of children with disabilities must be a fundamental part of Russia's future and that the needed changes in societal beliefs and attitudes must come from insightful and innovative family and system education and training.

In the area of family education, the Keystone Foundation is forming a network of organizations that will support and train parents and other family members to be both effective caregivers and advocates for their children with disabilities.

In the area of family education, the Keystone Foundation is forming a network of organizations that will support and train parents and other family members to be both effective caregivers and advocates for their children with disabilities. Through this initiative, we believe family members will rise to become effective agents of changes, combating the discrimination and stigma experienced by people born with disabilities in Russia, and learning to promote and protect the rights of their children. Experience demonstrates that to be effective agents of change, families first must be given a vision of their children as full, participating, contributing members of Russian society. Second, they must be supported with services that will be effective in helping to maintain their son or daughter in integrated settings – in other words, in the community with their nondisabled peers. And third, they need training and support in how to advocate effectively for their children.

The network we are building incorporates parent effectiveness training, specific skills training necessary to meet special needs, and training in how to work with schools, health care, churches, and the community to maximize support for the child. Participating families will be given the opportunity to meet and interact with families from Europe and the United States that have played effective roles in working to meet the needs of their own children.

We are also currently in the development stages of creating the Children and Family Center in Moscow. This will serve as a place for professional rehabilitation for kids and their parents with the help of a multi-disciplinary team of specialists. There will be educational programs offered, as well as parent clubs, group meetings, individual consultations, and individual development plans. It will also be a center for joint activities and fun – a place of support and encouragement, another type of home, as opposed to an institution. It is a beginning: If adjusted to other regional environments, cultures, social outlooks, and strengthened by local expertise it could become a model for replication anywhere in the country.

North Caucasus and Far East Projects

Keystone Foundation is providing services to children and families in the North Caucasus, specifically in the Republics of North Ossetia and Kabardino-Balkaria, with support from a grant from the United States Agency for International Development (USAID). The intent of Keystone Foundation's program in the North Caucasus region is to develop comprehensive and coordinated systems of care to address the immense educational and psychological needs of some of the most vulnerable children and families in the area. At the heart of this work is a commitment to protect the psychological development of these children and to empower their parents to become strong advocates. Again, with an emphasis on self-sufficiency and sustainability, it is our hope that these services will serve as models for replication elsewhere in the region and throughout Russia.

Keystone Foundation is also working toward the establishment of a Center of Comprehensive Support in Russia's Far East to work with families living in poverty and children who are at risk. The focus will be on prevention, early intervention, treatment, and community resources. The Center has been envisioned as a "healthy development" program for children and their families – a Center with a multidisciplinary approach that will support parents and teach "common sense" parenting.

We hope that the Center will become a locus for a developing comprehensive system of care, pulling from all the resources of the community and helping to develop new resources where there are none. Collaboration between service sectors is particularly essential when the needs of the community, families, children, and young people are very complex. The Center will work toward the integration of the full resources and capacity of the community to include, government, schools, healthcare, family, neighborhoods, religion, and business within a single collaborative network.

Contacts

Keystone is working among networks in Russia and internationally to provide support for people with disabilities and their families, and to create models that can be useful throughout the country. To find out more about Keystone internationally, please visit www.keystonehumanservices.org. To find about programs in Russia, please write to mdolbunova @ keystonehumanservices.org.

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