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• Slide Presentation for the lecture of: Steven EidelmanUniversity of Delaware, USA
• Topic of lecture: What`s Wrong with Hostels, Villages, Intentional Communities and, Yes, Institutions: An Advocacy and Funder`s Viewpoint
• The lecture was given at Beit Issie Shapiro’s 6th International Conference on Disabilities – Israel
• Year: 2015
What’s Wrong with Hostels, Villages, Intentional Communities and, Yes, Institutions: An Advocacy and Funders Viewpoint
Steven M. EidelmanH. Rodney Sharp Professor of Human Services Policy and Leadership
Size Matters!
SOME BACKGROUND
Article 25 of the Universal Declaration of Human Rights
“Everyone has the right to a standard of living adequate for the health and well-being of himself and his family, including food, clothing, housing, medical care and necessary social services.” (passed 12/10/48)
People with disabilities not referencedWe know that disability rights are human rights
"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 U. N. Convention on the Rights of People with Disabilities
(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 = DiscriminationSegregation = DiscriminationNot having choices =
Discrimination
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 by whatever name it is called!
Autonomy and increased independence generally do not happen in congregate settingsInstitutions do not make you safe.Some people need help making choices
due to lack of experiencedue to capacity
The CRPD promotes community livingFrom the Preamble to the CRPD
“(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. Israel – and other nations - cannot afford three tier systems-institutions, segregated community and inclusive community.
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 servicesdevelop policies and programs to support families
However families in their culture wish to be supported
What does the CRPD mean for people with intellectual disability?
Despite Progress… USA• ~ 169,000 people remain in large private and
state institutions in a country of ~319 million people• (Israel has 9-10,000 in a country of 8 million people)– They are trapped there due to the political clout of
employee unions, rural legislators and families who have guardianship over them
• 11 States have no public institutions
How We Got Here……
It all began with a rejection of the Medical Model of Care in the 1970’s•It expressed itself in the move from institutional care to community care.•Some things that were thrown out, especially the thoughtful participation of physicians, dentists and nurses and must be brought back, albeit differently, into our thinking and practice
The Tale of Four Ideals
Normalization
Inclusion Self-Deter- mination
1970’s 1980s1990s
Supports
2000s
Slides adapted, with permission from Val Bradley, HSRI
Ideal 1 -- Illuminates Institutions
Normalization
Large institutions are exposed as places that strip individuals of their humanity and connection with society; community system is the vision
Ideal 1 + 2 -- Attack Segregation
Inclusion
Normalization+
“Home-like” and “job-like” programs are criticized because they enforce segregation and do not lead to community membership
Ideals 1 + 2 + 3 -- Shift in Power
Inclusion
Normalization+
+Self-Determination
For people to have lives that they choose and to be supported in ways that facilitate their preferences, people must have control over the distribution of resources.
Ideals 1 + 2 + 3 + 4– The Supports Paradigm
Inclusion
Normalization+
+Self-Determination
For people to have lives that they choose and to be supported in ways that facilitate their preferences, we need to understand the what and how of supports… Supports are distinct from programs.
+Supports
What Research Data Tells Us
What the Data Tells US 2008-2009 National Core Indicators (US)
N= 8,892 adult responses across 19 states Those living in groups of 1-3 run by NGOs
reported significantly more everyday choice than those in homes of 7-15 or those above 16 people
What the Data Tells US 2008-2009 National Core Indicators (US)
N= 8,892 adult responses across 19 states Those living in groups of 1-3 run by NGOs
reported significantly more everyday choice than those in homes of 7-15 or those above 16 people
What the Data Tells US Ticha (2012) from that same data set
showed that people living in household of 1-3 people made significantly more choices in service settings and providers than those is 4-6 or 7+
Lakin (2008) in a study in 5 US states showed that smaller residential sizes associated with greater choice
What the Data Tells Us Residential size correlated with self-
reported satisfaction from two different samples of 1,000+ adults
People in larger places, greater than 6 more likely to report loneliness and less likely to say they liked where they lived compared to people in settings of 6 or fewer (Stancliffe 2007 and 2009)
What the Data Tells Us Emerson and Robertson (UK), 2001,
studied 218 adults living in group homes with 3 or fewer people had more inclusive and larger social networks that those in group homes of 4-6 people
Emerson, et. al. in 2000 n=500, smaller size significant predictor of more frequent participation in community activities, controlled for characteristics of residents
What the Data Tells Us People in community-based
residences more likely to participate in physical exercise that those in campus/cluster housing (Emerson, 2004)
Increased risk of abuse from co-residents in larger group homes (Emerson, 2001)
What the Data Tells Us Kozma, et. al. (UK, 2009) analysis of
21 studies – small generally offers more choice and self determination than large
McConkey, Ireland, 2007, People in supported living more social inclusion than those in campus style settings
What the Data Tells Us Gardner, Carran and Taylor (US, 2005)
in a study of accredited (By CQL) organizations, showed that people in independent living situations, controlling for level of disability, attained more outcomes than those is structured, supervised settings.
What the Data Tells Us 39 published studies examining
people leaving institutions and moving to community services (Kim, Larson and Lakin, 1999, USA) demonstrates that people do better outside of institutions than in them Studies examined were from 1980-1999 People usually do better out than in
What the Data Tells Us People in places of more than 6 have
fewer choices-both everyday choice of activities and choice in where they live (Ticha, et. al. 2012) (USA)
People in small homes-1-8 adults more choice and self determination compared to campus/cluster homes (Emerson, 2000, UK, Perry and Felce, 2005, US n=154)
What have we learned?
People with disability do better outside of institutions than inside of them.
This holds true for all levels of disability.
Community Supports can be developed
in a cost- effective manner.
OBSTACLES, CHALLENGES AND TOOLS
Now What?
The Precautionary Principle We know enough Scientific knowledge, especially studying
vulnerable people in long term supports is, by definition, limited
No credible evidence supporting segregation Long history of bad outcomes
Good public policy calls for going with what we currently understand while continuing to study
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
Change is about peopleand behavior... not about bylaws, structure, regulations, policies…it is about vision and overcoming obstacles
Why is it? We live in the age of But some still
promote congregate school and residential settings and even institutions as service models ……..villages, gated communities, etc.
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.
One cannot be part of the community while institutionalized Tasks relative to long stay institutions:
Close Institutions Build community capacity for all Increase NGO (provider) and governmental
capacity through training and technical assistance
Support Families Enhance Communities Prevent Institutionalization School for all children Education of policymakers “Second Order” Deinstitutionalization
Moving out of large non-governmental residential and day programs
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
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
Deinstitutionalization is a RectangleHelping people leave long stay institutions
Building Community Capacity for All
Preventing Institutionalization and Closing Admissions
SupportingFamilies
People should have homes, not homelike environments:Home is a place where:
You choose who you live with If someone asks, "Whose place is this?", people who live in their own homes say "mine" or "ours“ The people who live there have keys
(people who don’t, don’t) People don't have to ask permission to go
out, to eat when & what they want, make phone calls, have people visit, have pets, etc.
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.
*http://www.siswebsite.org/page.ww?section=Product+Info&name=Product+Info
Physical Presence is Not Enough – Inclusion is More than Geography Making a House a Home is About
Control and Choosing with Whom You Live, and Where
You cannot locate inclusion on a GPS, though you may be able to locate segregation and isolation
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. “When is a house a home?”
Insufficient resources to maintain three levels of programs Large Public/Private Institutions Medium size facilities/older community programs Community supports and services
We Also Must Prepare for Second Order Deinstitutionalization: The Transformation of Existing Community Services
Mistakes to be corrected…. Sheltered workshops Group homes where people are placed Segregated education Re-named institutions Programs that separate people from the
communities in which they live Rejection of medical professionals Others?
Saying to families that people are going to live independently
The goal is interdependence, self governance and control of the majorvariables in your life.
No one in this room lives independently
We are all interdependentInterdependence builds social capitalSocial capital strengthens communitiesTalking about independent living scares families
It scares me
What To Do??? We can’t stay
on this spot
We need to rethink what we do – affirm our values but resolutely search for “value”
This slide part of a series of slides- Sustainable Futures -A Joint Project of The Arc of the United States and HSRI
To finish deinstitutionalization and implement second order development of community inclusion, we can learn from our mistakes, and the mistakes of others.
The significant problems we face can not be solved at the same level of thinking we were at when we created them.
Albert Einstein
Steve’s Golden Rules of Working with Families
Start where the family is – all families are unique
Tell the truth Demonstrate integrity Provide information Answer questions Give families some time Project confidence and competence But be firm – People with disabilities are the
ones whose human rights are at issue
We are asking families to… Accept things they cannot see Leave things they know and may be
comfortable with Trust us
We were lying then or are we lying now? Have faith that the future can be
better
Families need to know Public policy is changing because of the
research, changes in national policy and the CRPD.
Once the decision is made to have people leave institutions we do not want to go back
People who receive support provided through or by government will see things change
Change is hard but the government is moving forward
We need to… Show and tell success stories Understand what is important to and
important for both families and people with disabilities
Communicate, communicate, communicate
Listen, Listen, Listen To families and people with disabilities
Fix things when they break Solve problems
What the CRPD Does1) It recognizes that all people with
disabilities have the right to live as equal citizens in the community Israel, by signing and ratifying, has
agreed to this right2) The CRPD calls for governments to take action
To review and change policies to support families
To put in place plans and activities to get people out of institutions
To Assure Quality and Personalization Monitoring and Evaluation must be
independent from the provision of services and of licensure Free of conflict of interest Accountable to people served and
government Both announced and unannounced Ability to respond to and monitor compliance
to complaints/resolutions Direct access to interview people in programs
The Community for All Checklist, developed by the Open Society Public Health Program lists steps necessary for governments to implement Article 19
Israel has three clear requirements for Article 191) To formally recognize the right of people with
disabilities to live in the community2) To take effective and appropriate measures to have
them enjoy that right, with choices equal to other Israelis
3) To take effective and appropriate measures to make sure people are full participants in community life
What does the Convention mean for the National Government?
The Community for All Checklist
Ten StepsIsrael should:
Step 1
Commit to transforming the system from institutional services to community-based services
Step 2Provide explicit recognition of the right to community living for all (the right of all persons to live in the community, “with choices equal to others”)
Step 3Develop a national strategy for transforming the system from institutional placements to community-based services and supports
Step 4Establish mechanisms to enable the participation of civil society, particularly people with disabilities and their families
Step 5Develop links with experts (national and international)
Step 6Review legislation, policies and practices relevant to the implementation of Article 19
Step 7Review existing services for people with disabilities
Step 8Ensure transparency and accountability in the use of public funds
Step 9Establish mechanisms for data collection
Step 10Establish mechanisms for periodic review of the action plan and national strategy
Sources-Resources Home and Community-Based Services: Creating Systems
for Success at Home, at Work and in the Community. U. S. National Council on Disability, 2015 http://www.ncd.gov/publications/2015/02242015/
Outcomes by Size of Community Residence, Summary of the Literature, Eunice Kennedy Shriver Center, May 1, 2014
University of Minnesota Rehabilitation Research and Training Center on Community Living, http://rtc.umn.edu/rtc/
The Council on Quality and Leadership, http://www.c-q-l.org/
Costs and Outcomes of Community Services for People with Intellectual Disabilities, Stancliffe and Lakin, 2005 Paul Brookes Publishers
So given all our constraints, what now?
The future ain't what it used to be.
Yogi Berra
The trouble with our times is that the future is not what it used to be.
Ambroise Paul Toussaint Jules Valery 1871-1945
Steven M. Eidelman 112 Alison Hall SouthNewark, DE [email protected]
