Implementing the Convention on the Rights of Persons with Disabilities

The Promise and Power of Community Living

Steven M. EidelmanUniversity of Delaware, USA

Prepared for:

The Third Session of the Conference of States Parties to the Convention on the Rights of Persons with Disabilities

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=DiscriminationSegregation=Discrimination

Not having choices=Discrimination

The CRPD promotes community livingFrom 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

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.

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)

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.

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

Why is it?

• We live in the age of

• But some still promote institutions as a

service model ……..

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

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

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.

The Deinstitutionalization Process is a rectangle Helping people leave long stay institutions

Building Community Capacity for All

Preventing Institutionalization and Closing Admissions

SupportingFamilies

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

• 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

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

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.

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.

• Alaska• DC• Hawaii• Indiana• Maine• Minnesota

• Michigan• New Hampshire• New Mexico• Oregon• Rhode Island• Vermont• West Virginia

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.

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

If I understand the adults withdisability I know, it is up topolicymakers 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

What does the Convention mean for people with disability?

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

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.

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.

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

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?

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.

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

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

Steven M. Eidelman H. Rodney Sharp Professor of Human Services

Policy and LeadershipThe National Leadership Consortium on Developmental

DisabilitiesDepartment of Human Development and Family Studies

University of Delaware312 Alison Hall West

Newark, DE USA 19716Phone 302-831-8536

sme@udel.edu