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Steven M. Eidelman University of Delaware, USA Prepared for:

Implementing the Convention on the Rights of Persons with Disabilities The Promise and Power of Community Living. Steven M. Eidelman University of Delaware, USA Prepared for: The Third Session of the Conference of States Parties to the Convention on the Rights of Persons with Disabilities.

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Steven M. Eidelman University of Delaware, USA Prepared for:

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  1. Implementing the Convention on the Rights of Persons with DisabilitiesThe Promise and Power of Community Living Steven M. Eidelman University of Delaware, USA Prepared for: The Third Session of the Conference of States Parties to the Convention on the Rights of Persons with Disabilities

  2. From the Preamble to the Convention “(c) Reaffirming the universality, indivisibility and interdependence of all human rights and fundamental freedoms and the need for persons with disabilities to be guarantied their full enjoyment without discrimination” Institutions=Discrimination Segregation=Discrimination Not having choices=Discrimination

  3. The CRPD promotes community living From the Preamble “(l) Recognizing the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices” You are not part of the community while in a long-stay institution! Autonomy and independence do not happen in congregate settings Some people need help making choices due to lack of experience due to individual capacity

  4. Article 19 and being part of the community 19.a. “Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement” • Just as (from the Preamble) “disability is an evolving concept” so is living in the community. • Is being in the community sufficient? • No. A necessary but not sufficient condition • Can the convention be a vehicle to help move from physical presence to participation and inclusion? • Yes.

  5. What is an institution? Institutions, by definition, deny access to the larger society to people with disabilities. An institution is any place in which people who have been labelled as having a disability are isolated, segregated and/or compelled to live together. An institution is also any place in which people do not have, or are not allowed to exercise control over their lives and their day-to-day decisions. An institution is not defined merely by its size." (ECCL http://www.community-living.info/?page=280 Accessed 27/08/10)

  6. People are institutionalized due to lack of resources and alternatives. • The “need” for long stay institutionalization. • is an artificial construct. • no research basis. • no research basis supporting institutions over well executed community inclusion.

  7. Examples, regardless of size, of institutions. • Orphanages, Institutions, hostels and “residential schools” for people with intellectual disability. • Sheltered workshops, segregated schools, and other congregate settings. • Any setting that serves to separate people from their communities

  8. Why is it? • We live in the age of • But some still promote institutions as a service model ……..

  9. There is nothing “Magic” about institutions, day programs or segregated schools • Magic is best left to magicians • Bricks and mortar, wood and tile, glass and carpet do not make a meaningful life • Meaningful lives are based on relationships, the ability to experience life and non-structured human interaction • You do not have a meaningful life in a large congregate facility surrounded only by paid caretakers

  10. Community Based Care is Not A Place • The movement to deinstitutionalization people has mostly been about real estate. • Level of Care (how much care people need) has been mostly about real estate also, not how people want to live or what they need. • Intensity of supports* allows one to plan, regardless of need or the place where supports are delivered. *http://www.siswebsite.org/page.ww?section=Product+Info&name=Product+Info

  11. The Ideal Planning Tool for Community Inclusion • A rheostat (dimmer switch) allows for infinite variation in the intensity of light, accommodating to the current needs of the user. • Supports can similarly be varied to accommodate individual needs, independent of the location of those needs. • Some call this person centered planning.

  12. The Deinstitutionalization Process is a rectangle Helping people leave long stay institutions Building Community Capacity for All Supporting Families Preventing Institutionalization and Closing Admissions

  13. One cannot be part of the community while institutionalized. Tasks relative to long stay institutions: Close Institutions Build community capacity for all Increase NGO capacity through training and technical assistance Support Families Enhance Communities Prevent Institutionalization School for all children Education of policymakers

  14. Many of the programs developed in the past are now the very programs which must now change. Physical presence in the community ≠ integration and inclusion. Insufficient resources to maintain three levels of programs Large Public/Private Institutions Medium size facilities/older community programs Community supports and services In Some Member States We Also Must Prepare for “Second Order Deinstitutionalization” By Transformation of Existing Community Services

  15. Institutional populations Institutions (under many names) are being rebuilt and new institutions are being built In some Member States, institutions do not exist and should not be started Most people with disability live with family Family support services and full-time special education for all (Article 24.2.a.) are alternatives to and prevent institutionalization Some issues Adults with disability living longer with families Aging workforce and shortage of caregivers

  16. What can we learn? • Is there something about New Zealand, Canada and England that are so unique it cannot be replicated in other countries? • New Zealand has ~4.1 million people and England is approaching 50 million • Does this mean that all people with disabilities in New Zealand and England have full access to their communities? • Canada, with ~33,500,000 people has been a leader on closing institutions.

  17. Alaska DC Hawaii Indiana Maine Minnesota Michigan New Hampshire New Mexico Oregon Rhode Island Vermont West Virginia In the U.S., some states (population ~29,000,000 or the combined populations of Austria, Croatia and Belgium) have closed all large public institutions for people with intellectual disability.

  18. Children and Deinstitutionalization • In the U.S., once all children with significant disabilities could attend school, institutional numbers dropped significantly • We can prevent institutionalization of children everywhere by supporting and strengthening families and communities • Article 4.1.b., “To take all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities.” Institutionalization is discrimination. • Article 7.2. “In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration.” • Children belong in families. • Families need support. • Support exists in a cultural context.

  19. People need experience with choices to make them • Those who have been institutionalized should experience options and possibilities • Families, when involved, may choose the known over the unknown • The leadership task, for adults, is to be aware of this tension • Effective strategies exist, especially for those with significant cognitive and psychsocial disabilities, to help people make informed choices

  20. What does the Convention mean for people with disability? If I understand the adults with disability I know, it is up to policymakers and professionals to: • move from facility and program-based services to individually designed and controlled services • develop policies and programs to support families • However families in their culture wish to be supported

  21. Formidable FactorsLimiting Change • The very practices and systems that need to change are the ones developed, as innovative, by the current generation of leaders. Walt Kelly, Pogo, Earth Day, 1970

  22. Providers/NGOs are doing what they were asked to do. They are now being told to change! Debate and discussion are valuable, but not changing is not acceptable. The CRPD is about the rights of people with disabilities, not the rights of organizations.

  23. We must market community inclusion • Based on benefit, not price. • Outcomes, not costs. • Supporting families and developing community capacity. • Focus on how people live and not how much it costs to support them. • Once you get into discussions of price, people with significant disabilities who may cost more to support, loose. • Population cost, not individual cost.

  24. Talk about it differently • Not deinstitutionalization, but developing community capacity for all people • Inequity of resources between those in institutions and those at with families • Same people, different support • Incentives in the wrong place

  25. How do we deliver on the promise of genuine community inclusion, participation and acceptance for all, without qualifiers as to the nature of a person’s disability?

  26. Marketing community inclusion to policymakers and donor organizations. It is counterintuitive If a Member State signed the CRPD its’ Foreign Aid programs should not be funding segregation. When policymakers see people who are different, they think “program”. When we think “program” our default position is building. An artifact of our roots in education.

  27. Implications • Member states need a plan to develop comprehensive community supports for those currently in institutions • Member states without institutions need a plan for comprehensive community support development • Community support development takes place within the context of local culture, history and traditions • Culture is hard to change but can change with exposure and education

  28. Community Inclusion for All is Possible The International Community knows how to do it Some are doing it well It will be hard work Most important work is hard It is better for people with disabilities It is better for Member States

  29. Steven M. Eidelman H. Rodney Sharp Professor of Human Services Policy and Leadership The National Leadership Consortium on Developmental Disabilities Department of Human Development and Family Studies University of Delaware312 Alison Hall West Newark, DE USA 19716 Phone 302-831-8536sme@udel.edu

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