Life in the community: It’s not just about a change in housing Steven M. Eidelman Life in the Community 1. –

"Where, after all, do universal human rights begin? In small places, close to home - so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighborhood he lives in; the school or college he attends; the factory, farm, or office where he works. Such are the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world." Eleanor Roosevelt March 27, 1958 “ IN YOUR HANDS: A Guide for Community Action for the Tenth Anniversary of the Universal Declaration of Human Rights ”

From the Preamble to the CRPD “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

The UN Convention promotes community living but was a compromise on institutions. From the Preamble to the UN Convention “(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. Nations cannot afford three tier systems- institutions, old community and contemporary community. –This is happening here today.

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? 10 US states with population of 22.1 million have no institutions Canada, with ~33,500,000 people is almost an institution-free zone.

If I understand the adults with intellectual disability I know, it is up to policymakers, organizations 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 intellectual disability?

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 labeled 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 Accessed 27/08/10)

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

Closure is the vehicle. The goal is to let every person pursue a decent life in the community It is about freedom and the opportunity to experience the community.

Closure is the vehicle, not the goal. The challenge is both political and programmatic The decision to close an institution is political –It is about resistance to change –It is about fears –It is about jobs –It is about the economic impact on local communities –It has nothing to do about what is best for people with intellectual disability

Closure is the vehicle, not the goal. The opponents of deinstitutionalization have been: –Some families of people in institutions –Some labor unions –Employees of facilities –Elected officials-facilities=jobs –Local business-facilities buy goods and services

Deinstitutionalization is a Rectangle Helping people leave long stay institutions Building Community Capacity for All Preventing Institutionalization and Closing Admissions Supporting Families

Community Based Care is Not A Place Deinstitutionalization has mostly been about real estate. Level of Care (how much support people need) has been mostly tied to 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. *

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.

There is nothing “Magic” about institutions, day programs or segregated schools Magic is best left to magicians Bricks and mortar, stone, wood 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

We need to market community inclusion Must be sold on benefit, not price. –Talk about outcomes, not costs –Focus on how people live and deemphasize how much it costs to support them –Once you get into the argument of price, then people with significant disabilities who may cost more to support, loose. –It is about the cohort cost, not the individual cost. –It is pro-family, pro-community, pro-individual freedom.

We have begun to talk about it differently Not “deinstitutionalization” – but developing community capacity for all people Inequity of resources between those in institutions and those at home with families –Same people, different support –Incentives in the wrong place

It is not automatic We must build infrastructure. We need to change the existing system of services and supports. As long as institutions exist, governments turn to them first... –to fix buildings –fill beds in response to pressure for residential services –give staff salary increases –Add staff in response to scandals

Formidable Factors Limiting 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 of services are doing what we asked them to do. We are now telling them they must change! Debate and discussion are good, but not changing is not acceptable. The CRPD is about the rights of people with disabilities, not the rights of facilities or institutions. The Challenge

People Who Earn Their Livelihoods in Systems Will See Major Changes They must be nurtured and supported as we move forward The are not the enemy Providers are not the enemy The state is not the enemy Complacency is the enemy

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?

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.

You can make the change This is hard work There are tools to determine what is important to people with disabilities There are tools to determine what is important for people with disabilities Once you know what is important to and important for people, you can tailor services to help people have a decent life

Thank you for your attention. Steven M. Eidelman University of Delaware Ph. 00+1* Národní centrum podpory transformace sociálních služeb 3P Consulting, s. r. o. Římská 12, Praha 2 Součást individuálního projektu MPSV Podpora transformace sociálních služeb.