Originally posted on Keystone Human Services’ website
“The welfare of all of us is vested in the welfare of each of us.”
This is a powerful sentence embedded within our vision statement, and one which brings with it great responsibility, challenge, and promise. Over the years, we have broadened our exploration of this concept. Since our founding in 1972, the world has become a smaller place, and the responsibility to “create a safer world” has caused us to reach far beyond our roots in central Pennsylvania. Once again, we are finding ourselves engaging with the struggle for building strong and inclusive communities alongside people with disabilities, their families, partners, and advocates far beyond our borders. This challenge of realizing that the “us” in our vision statement really does seem to mean every single one of us, whether in Chisinau or Harrisburg, Kazakhstan or New Delhi, resonates for us at this time in our development as a force for change.
As one of the first countries to ratify the United Nations Convention on the Rights of People with Disabilities, India is in a promising position to move forward with disability rights. This presents an opportunity to examine the systems of care for people with disabilities and move toward inclusive and community-based services. Many supports and services for people with disabilities are provided with a charitable mindset, and dependent on the benevolence of donor organizations to provide a patchwork of resources to families and people with disabilities. As India becomes a growing economic force in the world, extended family support structures are declining, and long-held traditions of family care for family members with disabilities over generations are at risk. Indian families share the concerns and fears expressed by so many here at home of “what will happen to my family member when I am gone?” In other parts of India, the conditions of abuse, neglect, and exploitation within the institutions, particularly towards women, are being documented and widely shared.
Keystone Human Services International was pleased to be invited to India for a study visit in February 2015, hosted by The Hans Foundation and the Rural India Supporting Trust. Dennis Felty, Elizabeth Neuville, Genevieve Fitzgibbon, and Philip Woffindin spent two weeks examining some of the resources already available for people with disabilities and their families, learning about the gaps that exist, exploring how current services might be strengthened and improved, and how we might work together to support NGOs and community groups to move in a positive direction. In addition to learning a great deal about what the possibilities and potential are in India, the team also brought back a chance to reflect on what can be learned, and what obligations we have to others, whether they be individuals, families, neighborhoods, or entire societies.
Some of what our team saw in India was surprisingly familiar, and reflected universal stereotypes and deeply-held mindsets about the capacity of people with disabilities that we have seen in many other places. Options for care and support for people with intellectual and developmental disabilities within India appear to be reliant exclusively on family caregivers with little to no support, or in highly segregated, congregated settings—in either case, deeply separated from everyday life. As we have learned through this visit, there are not many community-based services dedicated to people with intellectual disability.
At the same time, the deeply-held history of family care and communal support in village life in India leaves us much to learn from, build on, and apply, whether it’s India, Moldova, Romania, Azerbaijan, Kazakhstan, or the United States. There are more similarities than differences when it comes to the challenges and successes of providing community-based services for people with disabilities, and in some ways, our hard work in the US is now to capture the possibilities of “services in the community” to “services of the community.” We may have much to learn from other cultures and society in this struggle.
The crux of what we do to address those challenges is capacity building to increase the ability of people, communities, and countries to support people with disabilities to live meaningful lives in the community. Capacity building encompasses how we at Keystone strive to support people with disabilities, the language we use to refer to people, and disability issues, how we integrate and engage people, and how we support people to become part of the broader community. In addition, it encompasses the powerful decision to move alongside people with disabilities to take their place at the community table.
India is full of promise for a positive future for people with disabilities. During our visit, we met many gifted leaders and committed advocates ready to move India forward with inclusion, although their mindsets about what is possible are sometimes constrained by the legislative frameworks that exist. By building the capacity of leaders across India to envision a system of care where people with disabilities can be fully participating members of their communities, it becomes possible to transform the assumptions about the role of people with disabilities within a society, and move toward a more inclusive, rights-based model.
The Republic of Moldova has offered us a glimpse at what is possible when working towards change, as they begin the hard work of shifting from an entrenched institutional base towards an inclusive, community-based model. Much remains to be done, but the potential for developing natural support networks, communal support, and small residential options which promote lives of belonging, health, and contribution can be witnessed, and it is powerful change. Keystone Moldova has worked closely with the Central Government, Rayonal Councils, Social Assistance Departments, Finance Departments, and Local Public Authorities to develop and implement services and the legislative framework to manage and sustain those new services, and to offer them as not only a model for Moldova, but for those of us working in the US as well.
From June 27 through July 3, 2015, Keystone Moldova hosted members of The Hans Foundation and the Rural India Supporting Trust for a preliminary study visit to see the services offered in Moldova for people with intellectual disabilities. These services, such as supported living, foster care, family support, and shared living, provide more informal living situations and make use of the natural supports within the community, including the individual’s family. It was both moving and powerful to see the changes that are happening in the society, the families, the communities, and, most significant, in the lives of the people who have established new lives and new possibilities for a future of growth and belonging.
Much of the great progress made in Moldova comes down to capacity building and increasing natural supports, and we are seeing potential in Kazakhstan. With strong and positive mindsets about disabilities, and leaders and a framework to advance these mindsets, nations can advance the rights of people with disabilities and move forward with inclusion. In the process, they are likely to become better, stronger, and more robust societies.
Because of the universality of these issues, it benefits Keystone to maintain a global perspective. Everything we learn from our work in Moldova, Kazakhstan, Russia, Romania, Azerbaijan, and India informs us about our work in the United States, and vice versa. We are all facing similar challenges and working to do our best to provide services that give people with disabilities the opportunity for a meaningful life in their community.
Some of these challenges can seem daunting, but when we look to our vision of creating opportunities for growth and meaningful life choices so that all people can be valued, contributing members of their community, it becomes much simpler, and we continue to work to advance the human spirit.
President and CEO, Keystone Human Services International