AAA

1. Knowledge Database
• Slide Presentation for the lecture of: Steven Eidelman
University 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

2. What’s Wrong with Hostels, Villages, Intentional
Communities and, Yes, Institutions: An
Advocacy and Funders Viewpoint
Steven M. Eidelman
H. Rodney Sharp Professor of Human Services
Policy and Leadership

3. Size Matters!

4. SOME BACKGROUND

5. 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 referenced
We know that disability rights are human rights

6. "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”

7. 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 = Discrimination
Segregation = Discrimination
Not having choices = Discrimination

8. 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 settings
Institutions do not make you safe.
Some people need help making choices
due to lack of experience
due to capacity

9. The CRPD promotes community living
From 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.

10. 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 CRPD mean for people
with intellectual disability?

11. 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

12. How We Got Here……

13. 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

14. The Tale of Four Ideals
Normalization
Inclusion
Self-
Deter-
mination
1970’s 1980s
1990s
Supports
2000s
Slides adapted, with permission from Val Bradley, HSRI

15. 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

16. 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

17. 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.

18. 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

19. What Research Data Tells Us

20. 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

21. 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

22. 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

23. 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)

24. 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

25. 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)

26. 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

27. 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.

28. 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

29. 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)

30. 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.

31. OBSTACLES, CHALLENGES
AND TOOLS
Now What?

32. 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

33. 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

34. Change is about people
and behavior...
not about bylaws, structure,
regulations, policies…it is
about vision and overcoming
obstacles

35. 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.

36. 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.

37. 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

38. 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

39. 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

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

41. 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.

42. 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

43. 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

44.  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

45. 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?

46. Saying to families that people are
going to live independently
The goal is interdependence, self governance and control of the major
variables in your life.

47. No one in this room lives
independently
We are all interdependent
Interdependence builds social capital
Social capital strengthens communities
Talking about independent living scares
families
It scares me

48. 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

49. To finish deinstitutionalization and
implement second order
development of community
inclusion, we can learn from our
mistakes, and the mistakes of
others.

50. The significant problems
we face can not be solved
at the same level of
thinking we were at when
we created them.
Albert Einstein

51. 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

52. 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

53. 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

54. 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

55. What the CRPD Does
1) 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 right
2) 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

56. 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

57. 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 19
1) To formally recognize the right of people with
disabilities to live in the community
2) 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?

58. The Community for All
Checklist
Ten Steps
Israel should:

59. Step 1
Commit to transforming the system from
institutional services to community-based
services
Step 2
Provide 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”)

60. Step 3
Develop a national strategy for
transforming the system from
institutional placements to community-
based services and supports
Step 4
Establish mechanisms to enable the
participation of civil society, particularly
people with disabilities and their families

61. Step 5
Develop links with experts (national and
international)
Step 6
Review legislation, policies and practices
relevant to the implementation of Article
19
Step 7
Review existing services for people with
disabilities

62. Step 8
Ensure transparency and accountability
in the use of public funds
Step 9
Establish mechanisms for data collection
Step 10
Establish mechanisms for periodic review
of the action plan and national strategy

63. 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

64. 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

65. Steven M. Eidelman
112 Alison Hall South
Newark, DE 19711
302-831-8536
sme@udel.edu