The Community Living Research Project

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The Community Living Research Project

• School of Social Work
• University of British Columbia
• Research Team Tim Stainton (Principal
  Investigator), Rachelle Hole, Grant Charles,
  Carrie Yodanis University of British Columbia
  Susan Powell Kwantlen University-College
  Cameron Crawford The Roeher Institute
• Leah Wilson, MA, Project Coordinator

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Purpose of Research Project

• Investigate the current state of practice with
  regards to Community Living services in British
  Columbia in the following 4 key areas
• Young Adults Transitioning from High School
• Residential Alternatives/Options
• Non-residential Supports
• Services for Seniors

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Phases of Research Project
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REMOVING BARRIERS TO WORK FLEXIBLE EMPLOYMENT
OPTIONS FOR PEOPLE WITH DISABILITIES IN BC
by Alicia Priest, Marcy Cohen, Michael Goldberg,
Nick Istvanffy, Tim Stainton, Adrienne Wasik and
Karen-Marie Woods FEBRUARY 2008 CCPA BC OFFICE

• ccpabc_at_policyalternatives.ca

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• HOMESHARING
• A REVIEW OF POLICY AND PRACTICE

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QUALITATIVE STUDYWhat did we do?

• We invited self-advocates and family members to
  talk about their experience with Community Living
  supports in BC.
• What was working? What did they like?
• What was not working? What didnt they like?
• What did they hope to see?

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Focus Groups and Interviews, Spring/Summer 2006
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SA Desires for my Current Life

• Travel opportunities
• More time to spend with family and friends
• Greater independence and choice
• More employment opportunities
• An ideal society general acceptance,
  friendships

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Self-advocate Hopes Concernsfor the Future

• Start own business or get more work
• Move into a place of their own
• More independence and control
• Aging parents what does this mean for my future?

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Family Member Hopes and Concerns for the Future

• Safe and stable living situation
• Flexible, building independence
• Ownership options for self-advocate
• Monitored with accountability
• Flexible day options self-advocate choice
• Employment opportunities
• Build social networks
• Future support

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Needed Supports Services

• Organized information sharing within and across
  communities
• Guidance at different life stages
• Peer support preventing isolation, building
  connections
• Professional work training for
  self-advocates
• Flexible tailored supports
• Affordable housing options
• Day supports that meet family needs
• Lifelong learning opportunities

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TRANSITIONS

• "we started this process in grade ten or eleven
  like we apparently were supposed to so that
  everything would be in place when they finished
  school, but it was the Ministry that couldn't,
  didn't pull it together. We did the planning
  session. We did the assessment. The social worker
  made the recommendation for funding and that's
  where everything stalled because there again, the
  funding wasn't available."

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What did we learn from listening to the stories
of self-advocates?

• Leaving secondary school is hard because you have
  to say goodbye to friends and teachers.
• Leaving school is good because you get to spend
  more time doing the things you enjoy.

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What did we learn from listening to the stories
of self-advocates?

• Some young adults knew what they wanted to do
  after secondary school.
• Other young adults had no idea about what they
  wanted to do.
• Some young adults said there were not many job
  opportunities.

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What do self-advocates do after secondary school?

• Attend a day program
• Attend college or university
• Spend time with friends
• Special Olympics
• Volunteer
• Spend an extra year in secondary
• Creative activities
• Support groups

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What did we learn from listening to the stories
of family members?

• Transition is a scary, panic filled experience
  with a disconnect (separation) between systems.
• Young adults and families are often left in
  limbo as they leave the child system to enter
  the adult service system.

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What did we learn from listening to the stories
of family members?

• Family members talked about a drop in services at
  the age of 19.
• Family members were worried that self-advocates
  would be isolated and wanted them to have a place
  where they belonged.

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What did we learn from listening to the stories
of family members?

• Transition planning is unsatisfying and left
  until the last minute.
• Family members do not know about the options
  after high school.
• Having many different support workers gets in the
  way of transition planning.
• Transition plans are not followed through on.

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• "there was a specific meeting for her. It was
  okay but my concern there is that the social
  workers have changed so frequently that they
  didn't really know her and you're doing a meeting
  about her future."

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What is not working? What is ineffective?

• Lack of consistency/continuity in support staff
• Lack of coordination/ communication among systems
• Panic planning (i.e. last minute planning)

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What do self-advocates and families think would
improve the transition from high school?

• A list of supports
• Overlap in services
• Access to counselling support
• Creative and deliberate planning
• Sustainable funding

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Residential Alternatives Findings Summary

• "After a long day of doing chores, I need the
  staff to leave me alone so I can have some time
  to myself, to relax and unwind and I .just need
  some alone time. I wanna get married and as I
  said, no kids, just me, my husband and a cat or
  two in our own place where we actually own the
  house and staff aren't around every day to nag us
  to do this and do that.

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What is working? What is effective?

• Receiving support/assistance from caring people
• Open lines of communication
• Expertise service provider training
• Having support from family
• Opportunities for independence choice

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What is not working? What is ineffective?

• Planning is time consuming
• Interpersonal dynamics in living arrangements
• Safety concerns
• Absence of personal space
• Impediments to independence self-determination
• Family member burnout

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What are the barriers?

• Differing philosophies of support
• Lack of funding resources
• Lack of continuity in support workers
• Funding rules associated stress fear

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What are the gaps?

• Lack of individualized housing options
• Lack of emergency housing options
• Lack of qualified staff
• Lack of available information related to
  self-advocates living with spouses or partners

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• What do families and individuals want to see?
• Flexibility control in daily lives
• Safe, stable living environments with ownership
  opportunities
• Affordable housing
• Personal space
• Individualized living options
• Close proximity to peers
• Living out of family home ? own lives

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Non-residential Supports Findings Summary

• the program often defaults to what the staff
  would like to do and what is the easiest for
  everyone.

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What is working? What is effective?

• Age appropriate workers
• Receiving support/assistance from caring people
• Open lines of communication
• Expertise service provider training
• Continuity in support/front line staff
• Acceptance
• Personally meaningful activities
• Champions
• Having connections relationships with friends
• Support of for family members
• Individualized support with diverse activities
• Special Olympics

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• What is not working? What is ineffective?
• Structure routine limits choice
• One size fits all approach
• Inability to respond to heterogeneity of needs
• Too many choices
• Location of programs makes access difficult
• Dissolution of networks
• Absence or lack of service provider training
• Concerns about respite
• Panic planning

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What are the barriers?

• Beliefs about ability
• Lack of funding resources (unequal geographic
  distribution of resources)
• Lack of continuity in support workers
• Fear based decision making

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What are the gaps?

• Lack of individualized day support options
• Lack of appropriate and available respite
  providers
• Lack of resources to support meaningful
  activities

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• What do families and individuals want to see?
• An independent life like typical siblings/peers
• Enables parents to have their own life
• Will ask for help when needed we are capable
• Better transportation options ? independence
• Opportunities to participate in activities of
  interest flexibility in day activities
• More meaningful interesting employment
  opportunities
• Opportunities to expand social networks
• Travel opportunities

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Services for Seniors Findings Summary
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Female Self-advocate, Age 52

• I wish I could do more like I want to be doing
  more so I wouldnt feel so like Im not all alone
  I feel sometimes like during the day when
  everybody is working I feel I should be doing
  something but Im not.

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Future Plans Hopes

• Retirement
• Work
• Travel
• Leisure activities
• (e.g. music, crafts)
• Be a senior
• Independence
• Continue to live in
• current neighbourhood

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Male Self-advocate, Age 60

• I dont really want to retire, Id rather be
  doing what Im doing, keep going

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Future Concerns

• Aging parents
• if my dad dies,
• what will the future
• be for me?
• Living
• arrangements
• Loneliness

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Female Self-advocate, Age 52

• right now my parents are getting old and I
  worry about that constantly and I might get upset
  about this but anyway, its that theyre getting
  old and being able to be there for them and it
  worries me that Im not able to do as much as I
  could or someone with a car say, for example,
  like Id like to be able to go and pick them up
  and take them grocery shopping and take them to
  doctors appointments but I cant do that so I
  feel I want to, Im not a very good daughter.

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Aging in Place

• And one thing is my mom died of a heart
  attackit was hard for me

male self-advocate age 58
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Family Concerns about the Future

• Who will care for my family member?
• Dissolution of networks
• Where will my family member live?
• How will my family member be able to live the
  life they desire?
• Funding
• Choice

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Mother of 46 year old Daughter

• This is my single biggest concern that Jane
  not be left to driftandI think that by going to
  a respite and breaking that tie to get her to
  realize that she can exist without mum, without
  dad, um, that she can continue to live a good
  life and I think respite would give her thatyou
  know, confidence that gee, I can sleep in another
  bed beside my own and still beshed be
  established somewhere where she feels comfortable
  where she feels secure in her place and yes, Im
  there to back her up.

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WHAT IS NEEDED

• Families and individuals need support to plan for
  the future.
• Recognition of grief and loss issues
• Getting away from early retirement
• Increase options for aging in place

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• "...I want my son to become as independent as
  possible. I want him to have his own place, his
  own work, his own roommate, his own life and
  that. I don't want my other kids living with me
  till I'm eighty years old and I don't want him
  living with me till I'm eighty years old. He
  needs to have a life and we need to have a life
  and I just wish for him exactly what I wish for
  my other children. And that's what he should have
  and I'm going to make damn sure he has it."

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GENERAL SUMMARY THEMES
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Characteristics ofHelpful Supports Services

• Creative options
• Building connections
• Individualized support
• Going above and beyond
• Support for the family
• Flexibility
• Accessibility
• On the same page

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Characteristics of Ineffective Supports
Services

• Does not encourage abilities, potential, hopes
• Deficit Marketing
• Inflexibility one size fits all
• Lack of resources (e.g. staffing, funding)
• Inaccessible
• Changes in staffing
• Inexperienced staff
• Unsafe situations
• In appropriate use of resources (e.g. respite as
  babysitting)

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Community Living Research Project

• To find out more about the research project,
  please contact
• Telephone [phone]
• Email clrs_at_interchange.ubc.ca
• www.communitylivingresearch.swfs.ubc.ca
• This research is supported by the Ministry of
  Children and Family Development and Community
  Living British Columbia.