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This is a paper outlining the history of services for persons with
developmental disabilities, the current situation and proposed directions
and strategies for the future. Click
here for a PDF printable version
Table of Contents
Our Vision:
An Alberta that honors and respects the dignity and equal worth of citizens
with developmental disabilities.
Executive Summary
The Persons with Developmental Disabilities (PDD) Board Governance Structure
was put in place to improve services to persons with developmental disabilities
and to give communities opportunities to become involved in the planning and
delivery of services. In this first year of governance, we have had many opportunities
to receive input at the various community forums and deliberations of the boards.
The "Charting the Future Direction Paper" presents three directions
to guide the creation of the Alberta that was envisioned in the preamble of
the Persons with Developmental Disabilities Community Governance Act (1997).
Direction One: Persons with Developmental
Disabilities will have Opportunities to be Fully Included in Community Life.
Direction Two: Services Provided under the
PDD Board Structure will be based on Equitable Funding and Access to Resources.
Direction Three: The Ability of Communities
to Include People with Developmental Disabilities will be Supported.
This paper discusses these directions within the context of relevant literature
and policy development for the field of supports to persons with developmental
disabilities. A summary of the current situation in Alberta in relation to
these directions is provided. Then the paper articulates a vision of the future
that could be created using these directions and potential strategies to create
this future.
The directions, visions and strategies are presented to assist in creating
a climate that will allow options to emerge which will best support individuals
design their own futures in their own time schedules. The PDD Program
believes that people with developmental disabilities and their families/guardians
must be the primary designers of the future service system. The future is not
about specific service models or approaches.It is about respecting personal
choice and reinforcing personal control over supports required by people in
their life journeys.
The proposed future and strategies presented here will be reviewed multiple
times in the months and years ahead, to ensure the PDD Community Governance
direction stays aligned with the desires and wishes of all people with developmental
disabilities. It will be from this vision of the future and these strategies
that approaches to improve services throughout the province will be pursued.
Introduction
The Persons with Developmental Disabilities (PDD) Community Governance Act
(June, 1997, "The Act") in its preamble notes:
…the people of Alberta honour and respect the dignity
and equal worth of adults with developmental disabilities;
…it is important that adults with developmental disabilities have opportunities
to exercise self-determination and to be fully included in community life;
…the individual needs of adults with developmental disabilities are most effectively
met through the provision of services that are based on equitable opportunity,
funding and access to resources; and
…the Government of Alberta recognizes, values and supports the ability of communities
to respond to the needs of adults with developmental disabilities.
Persons with developmental disabilities and their families in province wide
focus groups in 1996/97 defined the following as important in their lives:
- Having strong, positive relationships with my family and significant others
- Enjoying my leisure time
- Being independent
- Having a job
- Being included and participating in the community
- Having choices and being able to make decisions
- Being treated with respect
- Being safe
- Taking care of my health
This paper provides background on the development of services for persons
with disabilities, the situation in Alberta today, and then outlines the vision
for tomorrow with a list of proposed strategies. These directions and strategies
have been built from information which led to "The Act" being established
and the community consultations which have been occurring in each region since
April 1,1998.
The PDD Program views the directions in this paper as a guide that
will serve to:
- Reach the future envisioned in the preamble of the legislation that set
up the community governance structure; and
- Support the many attributes of life that are important to people with disabilities
and their families.
Charting the Future Direction is a "living document" that will continue
to be changed as the Provincial Board receives feedback and direction from
the citizens in Alberta with developmental disabilities and their families
and guardians, service providers, local and provincial associations, staff
of the PDD Boards and the Ministry.
This feedback will be received in many ways including:
- information provided to the Community and Facility Boards through their
on-going consultation, visioning and information sessions in local areas;
- issue identification and resolution in local communities through on-going
operations and as part of the business planning cycle for each Board; and
- information acquired from the province-wide satisfaction survey.
The directions in this paper will be reviewed using the information gathered
over the year to ensure the Provincial Board stays aligned with the desires
and wishes of persons with developmental disabilities. If you have not had
an opportunity to provide your opinion to the PDD Boards through the above
noted channels or you wish to provide feedback specific to this paper, your
comments would be most welcome. A list of the Provincial Board Members and
the Chief Executive Officers has been attached to this paper for your convenience.
DIRECTION ONE: Persons with Developmental Disabilities
will have Opportunities to be Fully Included in Community Life
Changing Philosophies in the Provision of Services
Services to people with developmental disabilities have experienced three
distinct eras based on different social and philosophical contexts. Bradley
and Knoll (1995) describe three models which have shifted in their dominance
during the last three decades:
- medical or custodial model
- developmental or program model
- citizenship or community membership model
Medical or Custodial Model. The first part of this century was characterized
by the philosophy of segregation which resulted in large numbers of individuals
being removed from their families and communities to live in institutional
environments.1 The medical or custodial model influenced the manner in which
services were provided. During the 1960s and ‘70s, increasing knowledge of
the conditions of life in institutions resulted in demands for reform. This
inevitably led to a re-evaluation of the prevailing approach to service delivery
and the introduction of new philosophies.
(Note: References to "institutions" made later
in the document include the characteristics of segregation based on disability
consistent with this description of the medical or custodial model).
Developmental or Program Model. As the pressure increased to get people out
of institutions and into communities, the developmental model of service delivery
emerged during the 1970s and ‘80s. It was believed that all people, regardless
of their disability, could learn and develop skills and should be encouraged
to do so. Services became focused on individual "programs" and plans,
typically directed by a team of professionals whose goal was to teach the skills
necessary for the individual to live in the community. Although this approach
benefited many individuals, the developmental model also received some criticism.
Often skills were taught through elaborate procedures that were removed from
the context within which they should be applied (e.g., teaching cooking skills
in a day program rather than at home). Even more troubling was the underlying
assumption that, for individuals with disabilities, living in the community
was a privilege to be earned – not a right of citizenship.
Citizenship or Community Membership Model. In the 1990s, the pendulum has
swung almost full circle so that by far the majority of individuals with developmental
disabilities now live in communities. The prevailing philosophy of citizenship
or community membership recognizes the right of every individual to live in
his or her own community and enjoy the same benefits as do other people. The
term "community alternatives" becomes irrelevant, as there is no
alternative to the community – it is a universal right of citizenship. Current
challenges focus on full community inclusion – so that individuals do not live
in isolation within their communities, surrounded only by professionals and
paid support staff.
Alberta Today
All three approaches can be seen in the current delivery of services throughout
Alberta and each approach from an earlier era has tried to incorporate new
philosophies within the older model of service.
Institutions or facilities in Edmonton, Red Deer, Calgary and the South Region
provide supports to some 800 people. In the 1970s almost 2500 individuals resided
in institutions.
Community services are well established throughout Alberta and provide supports
to over 8000 individuals with developmental disabilities. The types of services
and supports range in approach from the developmental to the citizenship model.
Experience has shown that living in group homes or attending segregated day
activities can be an isolating experience for individuals, and service providers
are continuously challenged to promote full inclusion. Increasingly people
are understanding that community living is not so much a type of service or
a building, but relationships and activities. This is resulting in the emergence
of shared-living models rather than group homes, the provision of supports
that are tailored to the individual, and portability of funds. More and more
individuals with developmental disabilities are experiencing relationships
with community members.
Alberta in the Future: Inclusion in Community Life
This 10-year plan of the PDD Program proposes a future where persons
with developmental disabilities will have freedom of choice as to where, and
with whom, they live. The Provincial Board believes that achieving inclusion
in the future speaks to more than just where a person resides. It also means
individuals with developmental disabilities will live as full citizens in interdependent
communities and that they:
- Are respected, valued and welcomed by others in their communities
- Are supported to live where they choose to live
- Have opportunities to live on their own or share a home with a small number
of other people
- Receive supports based on individual needs and preferences
- Participate in the same relationships and activities that most people choose
and enjoy, such as:
- Strong relationships with friends and families
- Participation in their communities
- Meaningful employment opportunities
- Making decisions about events in their lives
- Enjoying leisure activities
Strategies for Inclusion in Community Life
…because experience demonstrates that people are more
fully included as citizens when they are part of daily community life; and
…because individuals with developmental disabilities and families want to have
lives that include the same relationships and activities that most people choose
to enjoy; and
…because every individual has unique skills, gifts and aspirations;
the following strategies are proposed:
- Individualized planning will occur which includes identification of the
unique skills, gifts and aspirations of individuals and their support requirements
- Individuals receiving supports funded through PDD will be given every opportunity
to participate in the same relationships and activities that most people
choose to enjoy
- Opportunities to experience new types of supports and services will be
supported through education, trial placements and visits to assist people
in making the choices they want for the future
- Innovative service models to support persons with complex needs that allow
for community inclusion in regular communities will be explored
- The community and facility boards will work co-operatively to develop individual
program and funding plans that support the choices of dependent adults who
want to move out of institutional services.
- Community Boards will be responsible to fund services for individuals who
have to move out of their community because the services are not available
within their community
DIRECTION TWO: Services Provided under the PDD Board
Structure will be based on Equitable Funding and Access to Resources
Cost of Providing Supports
Little literature exists on overall equity in service supports for persons
with developmental disabilities. Most of the discussion in the literature in
relation to equity focuses on the relative cost of providing services in the
community as opposed to in institutions.
This literature does indicate that the overall average cost of community living
is less than the average institutional costs (e.g., Ontario Ministry of Community
and Social Services, 1997). It should be noted, however, that despite the economic
platform, in all situations the underlying rationale for closing institutions
was to provide better services rather than to reduce service costs.
Alberta Today
The manner in which services have been and are currently funded in Alberta
reflects the three philosophical models discussed under Direction One above.
In the institutional era, government directly operated and funded facilities
to provide services to persons with developmental disabilities. As community
services developed in response to families who wanted their children supported
locally, funding was typically directed (through contract) to the service provider
to deliver agreed upon programs. During the 1990s, families requested a stronger
voice about what and how services were provided. To facilitate their involvement,
funds have been given directly to many individuals to purchase the services
that they need, where they choose. It is believed that putting the money in
the control of the consumer allows supports to develop in a way that is responsive
to the unique needs of that person. Variations of these funding models continue
to evolve as efforts are made to promote the autonomy and authority of the
consumer, while reducing administrative complexities.
The evolution of funding methods, though supportive of the changing philosophical
approaches in the delivery of service, has lead to inequities in ease of administration
and questions on equitable distribution of funds. Funding models need to be
reviewed to address: issues of equity, outcomes of service for the individual,
and effectiveness of resource utilization.
During 1998/1999 in Alberta, $269 million was budgeted to provide services
to adults with developmental disabilities. Facilities were allocated $64.7
million, contracted services $96.6 million and individual funding $107.6 million.
The graph below illustrates the amount of funding under each funding model
related to the percentage of people served through facilities, community agency
contracts and individual funding.
People By Funding Model
Alberta in the Future: Equitable Funding and Access to Resources
The PDD Board recognizes that in order to fully include persons with developmental
disabilities in community life, the current resource distribution among service
models must be addressed. The future distribution of funds must have the following
characteristics:
- Funding is directed to services which are meeting the expectations of people
with developmental disabilities and families
- Variance in funding is due to the support need requirements of the individuals
receiving services
- Funding allows for fair pay to the workers supporting persons with disabilities
- Services offering similar supports and producing effective outcomes for
people are treated equitably
- Individuals and their families are able to control the funds provided to
purchase supports and services
- Funds for service supports are expended on direct support services
Strategies to support Equitable Funding and Access to Resources
…because we need to ensure that the current resource
base is equitably distributed; and
…because the current funding model is historical in nature and needs to be
made congruent with the direction of full inclusion; and
…because control of the funds needs to be placed with individuals with disabilities
and their families to ensure they have choice and a strong voice in directing
service;
the following strategies are proposed:
- Design and implement a province-wide method of determining needs and the
supports costs for individuals
- Compare costs for similar services, including the level of support and
achievement of outcomes, on a province-wide basis
- Promote strategies which actively address fair wages and skill development
for staff who provide supports to individuals
- Implement strategies to ensure the funding of services is equitable across
the province
- Design and implement methods of individualizing group costs so that individuals
and families can make informed decisions about expenditures
- Require that portability of funds be a standard across the province
- Examine the current funding methods in order to simplify administration
and address existing inequities
DIRECTION THREE: The Ability of Communities to Include
People with Developmental Disabilities will be Supported
What is Community?
Central to the understanding of community, as it relates to the inclusion
of persons with disabilities, is the concept of common "ties and interests".
According to Neufeldt (1988), community develops around commonality. Within
neighbourhoods people may unite around common concerns such as neighbourhood
safety or barking dogs. Community allows for the development of common experiences
and shared beliefs. Voluntary associations and organizations such as self-help
groups, religious fellowships, the Kinsmen Club or the local bowling league
are examples of communities.
Regardless of the level of disability, there is evidence that commonality
is recognized between people with developmental disabilities and non-disabled
persons when time and opportunity allow for the relationship to develop (Bogdan & Taylor,
1987). Some people with developmental disabilities find it difficult to develop
relationships with people in their communities when they are dependent on professional
caregivers. Community members who are provided with the opportunity to develop
relationships with people with developmental disabilities demonstrate a capacity
for caring and compassion.
Alberta Today
The majority of services offered in Alberta are provided through non-profit
associations. The volunteer boards of these associations are made up of hundreds
of citizens who want to contribute to their communities. In the province, examples
are emerging of persons with developmental disabilities becoming active members
of community churches, associations such as Scouts Canada, Elks, and Kiwanis,
as well as assisting community leagues and other associations that are open
to all community members.
Alberta in the Future: Communities and Persons with Developmental Disabilities
The PDD Board believes that Alberta communities are caring and responsive.
Opportunities must be provided to open doors to citizens to allow relationships
to develop. It is by seeing each other as community members with common experiences
and shared beliefs that people with developmental disabilities will be viewed
as full citizens. This future envisions persons with developmental disabilities
having the opportunity:
- To serve in leadership roles in the local communities
- To participate in and contribute to the events and associations which make
up their local communities
- To have an active voice, not only in decisions that impact their lives,
but also in decisions that affect the lives of others in their communities
Strategies to Support Communities and Persons with Developmental Disabilities
…because communities have the capability of welcoming
the diversity and unique contributions of all their members; and
…because relationships in communities have the potential of providing creative,
personal networks for inclusion;
the following strategies are proposed :
- Provide active education and public communication to highlight the contributions
that persons with disabilities and their families make to our communities
- Provide skill development to persons with disabilities and their families
to enhance their capacity to participate effectively in groups, committees
and public forums
- Support activities (e.g., training, education and self-help groups) that
assist persons with developmental disabilities and their families to undertake
leadership roles within their communities
- Ensure that the PDD community governance structure supports and encourages
decision making at the community level based on input from persons with developmental
disabilities, their families/guardians and the local communities
- Align with community groups, organizations and associations who want to
have persons with disabilities involved in their organization and activities
References/Background Material
A Context for Community Inclusion, Ministry of Community and Social Services,
Ontario, 1997.
Bogdan, R., and Taylor, S. (1989) Relationships with severely disabled people:
The social construction of humanness. Social Problems, 36,2, 135-146.
Challenges and Opportunities: Community Living for People with Developmental
Handicaps, Ministry of Community and Social Services, Ontario, 1987.
Creating Excellence Together, Accreditation Standards, Alberta Association
of Rehabilitation Centres, Draft Document, 1999.
Lesueur, R. (1991) Making Connections: Persons with Disabilities in Community.
An unpublished background paper, April 1991.
Neufeldt, Alfred (1988) Nurturing Healthy and Inclusive Communities: Two Natural
Experiments in Mutual Aid. Based on a paper presented at the Canadian Public
Health Association Annual Conference, Quebec, July 4-7,1988.
The Official Position of People First of Canada on Closing Institutions, Adopted
by the 4 th Annual General Meeting, March 29, 1998.
Report on Comparative Costs of Facility Care and Community Care in Response
to Standing Committee on Public Accounts, Ministry of Community and Social
Services, Ontario, 1997.
Response to the D. E. Allen Review of Contracting and Restructuring, Ministry
for Children and Families, British Columbia, July 1998.
Shifting Paradigms in Services to People with Disabilities, by Bradley, V. & Knoll,
J., in Community Rehabilitation Services for People with Disabilities, O. C.
Karan & S. Greenspan (Eds.). Butterworth-Heinemann, USA. Pg. 5-19.
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