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Excerpt from my new book

September 21, 2011

It’s “back to school” time, so I thought I’d share an excerpt from a book I’m working on, which will be published by Spectrum Press in early 2012.  I’d been looking for resources to use in staff training – current, Canadian content; practical information for staff supporting people in community settings – and discovered there isn’t a whole lot out there.  So I decided to write something myself.  The working title of my book is “Community Support Worker Essentials: supporting people with developmental disabilities in their pursuit of the good life.”  The excerpt is taken from the first section of the book, which looks at the history of community living services and how the system we are working in has evolved over the past 50 years:

THE EVOLUTION OF SERVICES

The first community services for people with developmental disabilities were started by parents in the 1950s, and were run out of church basements or other donated space.  By the 1960s, service providing organizations had sprung up all over North America, also started by parents, in response to the growing demand for residential and day support services for the increasing number of people with disabilities who were living in the community.  The service system grew rapidly through the 1970s and 80s, and has continued to evolve to meet the expectations of people with disabilities, and in response to society’s changing attitudes and expectations.  This evolution can be summarized according to three distinct approaches, which are outlined below and described in more detail on the following pages. 

 

 Custodial Approach

 

Developmental Approach

Citizenship Approach

Intended Outcomes    – Segregation- Exclusion – Integration- Mainstreaming – Inclusion- Belonging
View of people with disabilities  – Burden- Dependent – Tolerated- Capable of learning – Valued- Enriching to society
Roles available to people with disabilities – Patient- Resident – Client- Program participant – Citizen- Community member
Staff roles – Care aide- Attendant – Vocational / residential care worker  – Supporter- Facilitator
Planning focus – System-centred – Program-centred – Person-centred
Service focus – Specialized services- Focus on compliance – Continuum of disability-related services- Focus on rehabilitation / training – Typical (generic) services augmented by specialized services- Focus on empowerment

Custodial Approach

The custodial approach assumed that people with developmental disabilities needed protective care in environments that were designed to meet their special needs.  The focus was on creating a safe, secure, and controlled environment (although, as we’ve seen, this focus was largely theoretical and did not translate into practice – if anything, custodial arrangements tended to increase people’s vulnerability).  The most obvious example was institutions, but it’s not just large residential institutions that fit the custodial model.  Smaller settings can also be custodial, for example a group home where staff take on a parental role, providing care and supervision to the residents but not necessarily encouraging their personal development or providing access to typical life experiences.  Even a one-person home can be a custodial arrangement.

The early community-based services tended to replicate the custodial approach of the institutions.  The focus was on creating smaller, more normalized environments in the community, but with no working models to go on besides the custodial approach, many of the same principles and practices carried over from the institution to the community.  People were congregated in groups and assigned to program placements according to their perceived level of functioning (which, it was assumed, would not change).  Professionals and program supervisors became their custodians, often assuming complete authority over people’s lives. 

Compliance and standardization were key features of the custodial approach.  The only real expectation of people in a custodial service was that they comply with the conditions set by those in charge.

Developmental Approach

Unlike the custodial approach, which viewed people as dependent, the developmental approach assumed that people could learn to function more independently.  It was based on the belief that all people pass through the same developmental milestones, and therefore the task of educators and service providers was to help people achieve these milestones in the usual order, however long that might take.  A continuum of services evolved, the purpose of which was to get people “ready” for community living.

The developmental, or readiness approach, emerged in the 1970s and focused on teaching people skills that would lead to increased independence.  At one end of the continuum were pre-vocational centres, where people would learn to sort nuts and bolts as a pre-requisite to assembly line work in a sheltered workshop.  This, in turn, would prepare them to be part of a work crew or “enclave” in an actual community setting, and so on up the line to eventual competitive employment.  The developmental approach had people learning to identify coins as a step toward one day having their own bank account; learning social skills in a group activity program so that someday they’d be ready to have friends. 

The problem was, most people didn’t move through the continuum.  Skills acquired in one setting did not transfer to other settings.  Programs that were intended to be transitional became permanent placements, where learning objectives gave way to custodial pressures as people kept coming into services, but rarely left.  Barb Goode recalls how she was held back in the group home where she used to live, even after mastering all the steps supposedly needed for her to move on to greater independence:

“Exactly one year after I moved into the group home, I wanted to move out.  But I was told I had to wait six months.  During that time I had to practice life skills targets that the staff set for me.  I role-played cleaning the house.  I was  taken grocery shopping, but the staff still did the actual grocery shopping.  I did make-believe budgeting which didn’t help me at all when I eventually got my own place. 

For the last six months or more at the group home they were trying to teach me to do all these things, but I rebelled. They get you all prepped up, but then you don’t really do anything.  You have to be able to write up a budget, you have to be able to clean, and you have to pass all these different tests.  What about the average person?  Excuse me for saying so, but you don’t have to pass any tests to be allowed to move out on your own.  You just move.  You learn as you go along.”  (Goode, The Goode Life, 2011)

 The chart below illustrates the continuum of services, with the most restrictive environments at the bottom end of the continuum and least restrictive at the top end.

THE OLD “CONTINUUM OF SERVICES”

 Competitive Employment

 Supported employment

Pre-employment programs

Sheltered workshops

Pre-vocational centres

 Independent Living

Semi-independent living

Supported apartments

 Group homes

Extended care

                                Vocational Services                                               Residential Services

Citizenship Approach

The developmental approach saw community living as something people would earn once they developed the skills needed for independent living.  The citizenship approach maintains that community living is a fundamental right of all people, not a privilege reserved for a select few.  Rather than prescribing how people should live or what skills they should learn, the role of services is to support people to take control of their own lives.  The citizenship approach adopted many of the same principles, and even the language, of the civil rights movement.  The custodial and developmental models were criticized for perpetuating segregation, where the citizenship approach advocated integration, and later, inclusion.  Issues of discrimination and equality rights started being discussed in relation to people with developmental disabilities.  The community living movement gained momentum as a kind of civil rights movement for people with developmental disabilities. 

Political activism aimed at securing equal rights was an early focus of the citizenship approach.  During the 1980s, some of the more progressive service providers began shifting their focus away from systems-driven custodial and developmental approaches to a more personalized approach that gave people more of a say in how their support was provided.  People with disabilities themselves started getting involved in boards and committees of organizations, forming peer support and self advocacy groups, where previously it had been parents leading the advocacy effort on behalf of their sons and daughters.  An early focus for self advocates was pushing organizations to change their names from associations for the mentally retarded to community living associations, signalling a shift away from a charity perspective to one of empowerment.

Another feature of the citizenship approach that emerged in the 1980s was the notion of individualized funding.  In Ontario, Judith Snow became the first person in Canada to obtain individualized funding, meaning she got the government to agree to carve off the portion of funds that were paying for her to live in an extended care facility, and have these funds given directly to her.  Gaining control of her own individualized funding allowed her to move into her own home, hire her own staff, and direct her own supports.  In B.C., the Vela Microboard Association started in 1987 as a way to give individuals and families more control over their services, including, if the person so desired, securing individualized funding.  A microboard is a small group of committed people who come together around one person with a disability and form a non-profit society (a board) for the sole purpose of supporting this one person.  There are many other successful examples of individualized funding arrangements, in B.C. and across North America; however, individualized funding is still the exception, not the rule.  Most of the funding for community supports continues to be directed to agencies for block-funded residential and day programs. 

The 1980s saw many positive changes in the area of individual rights.  The independent living movement, started by people with physical disabilities back in the 1960s, inspired people with developmental disabilities to start asserting their right to live independently.  School boards were pressured into allowing children with disabilities to attend their neighbourhood school instead of being bused across town to segregated schools.  The Canadian Charter of Rights and Freedoms bestowed equality rights on people with developmental disabilities.  Municipalities began enacting bylaws requiring buildings and public spaces to be accessible to people with disabilities. 

These were historic changes, all happening within the space of a few short years.  It seemed as though the barriers were all coming down, and now it was just a matter of moving people back into the community to take up their rightful place alongside everyone else.  Unfortunately, it wasn’t to be quite that simple.  As time went on, people began to realize that while independence and equal rights are crucial, they represent a means to an end, and not the end itself.  Integration doesn’t guarantee belonging.  Independence without relationships or valued social roles can make for a very lonely life.  Interdependence more aptly describes what most of us strive for.  We need other people, and we need to feel needed.  Having equal rights brings with it an expectation of equal responsibilities: the right to make our own decisions is balanced by the responsibility for our decisions; the right to live in a home of our own brings with it the responsibility for maintaining a household, paying the bills, and so on. 

It’s still early days, and much work remains to ensure that all people are aware of and claiming their rights as equal citizens.  What we do know is that citizenship involves more than simply being present in community.  It’s about meaningful engagement, personal accountability, and reciprocity – these are some of the principles that will shape the continuing evolution of services.

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3 Comments leave one →
  1. October 3, 2011 5:34 pm

    Thank you for sharing a sneak peak! Very interesting and useful! Can’t wait for the full edition.

  2. October 3, 2011 5:56 pm

    Hello Susan, me too! I will share this widely within my networks! Cheers, Monique

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