Young Carers in Canada MOVING MOUNTAINS

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Young Carers in CanadaMOVING MOUNTAINS

• A network of 17 community agencies formed in
  2004 to address the issue of young carers
• The first in Canada
• LEAD AGENCY Alzheimer Society of Niagara
  Region (ASNR)

Mount Everest
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MOVING MOUNTAINSEvolution of a Public Issue

• Young carers an evolving public issue in Canada
• James Post (1986) wrote about the Public Issue
  Life Cycle
• The Life Cycle is a measure of continuing public
  concern about an underlying problem
• Post identifies a four-phase process in bringing
  an issue to public attention
• In the evolution of a particular issue, Post says
  these phases are predictable

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MOVING MOUNTAINSPhase One A Personal Evolution
Four Canadian Young Carers Young Caregiving is
an emerging public issue in Canada Phase One
might begin with personal awareness within ones
own family.
Everyone in the family is affected when a close
relative has a chronic disability, long-term
illness or needs help for some other reason.
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MOVING MOUNTAINSPhase One Rising Awareness
Caregiving is a family event. The person
needing care can become the focus of the entire
family. The family must adapt and adjust to the
changing situation.
Gan Gan and Bradley 1995 The awareness that
children take on caregiving roles often begins on
a personal level.
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MOVING MOUNTAINSPublic Issue Life Cycle Phase
One

• Post says that in Phase One, there is rising
  awareness and sensitivity to the issue
  individuals and community agencies take note of
  situation.
• Attention is drawn to the problem through various
  means community agencies start to take action
• In Niagara, the Alzheimer Society tracked 72
  children living with a parent or grandparent with
  dementia (2003)
• Many of these children did not thrive and many
  took on caregiving roles.
• The Alzheimer Society decided to take action.

Young Carers Tasks Go beyond ordinary chores
most kids have to do. Tara, 6 and Bryce, 9, Help
remember Elders what to do.
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MOVING MOUNTAINSChildren in Dementia Care
Families Action Plan

• Fowler Foundation 68,000 grant (2003)
• Two primary goals
• First goal Conduct a literature review on
  children in dementia care families.
• Second goal Develop a network of community
  agencies to share resources, provide support for
  children in dementia care families in the Niagara
  Region.

Tasks of Young Carers practical, personal,
emotional
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MOVING MOUNTAINSYoung Carers in Canada The
Unrecognized Population

• Literature Review Over 300 Bibliographical
  entries journal articles, magazines, books,
  studies, web sites
• Found no Canadian information on children in
  caregiving families except for one study Growing
  Up Strong by the MS Society of Canada (2004)
• One huge finding A global young carer movement
  had started in Great Britain in the early 1990s.
  This movement was dedicated to raising awareness
  of children in caregiving roles and to providing
  support for them.
• The Alzheimer Society of Niagara decided to
  broaden the parameters of its project to include
  young carers in general, not just children from
  dementia care families.

Personal Tasks Helping with mobility,
toileting, grooming, bathing, dressing, giving
medications
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MOVING MOUNTAINSPhase One Rising Awareness of
the Facts

• The Young Carers Initiative Niagara (YCIN) was
  started in 2004 to address the needs of children
  in caregiving. environments (i.e. young carers).
• This was the first time in Canada that attention
  had been given to young carers.
• 17 agencies from across Niagara which provided
  services to children, youth or adults/seniors
  formed the YCIN network.
• They shared a common interest children in
  caregiving environments.
• All agreed these children are a hidden population
  in need of some specialized community services
  and programs.

Young Carers Needs Recognition, information,
peer support, social activities, school support,
a chance just to be kids
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MOVING MOUNTAINSOrganizing the YCIN

• Chose a name and logo
• Developed Terms of Reference
• Created a philosophy statement
• Applied for a Trillium Grant
• Twoyears, 135,000
• Goals included a Needs Assessment
  (research), building community awareness,
  developing programs for young carers and holding
  a conference on young carers, the first in
  CANADA.

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MOVING MOUNTAINSChallenges re the YCIN Network

• Transient membership due to staff changes
• Agency changes in priorities, mission, etc.
• In-house education to staff and boards difficult
  to organize
• YCIN reps not usually the decision makers within
  the organization
• Collaborative efforts time consuming (slow
  information flow, getting permission etc.)
• No one knew what the term
• young carer meant

Practical Tasks Cooking, cleaning, laundry,
making beds, other chores
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MOVING MOUNTAINSOther YCIN Challenges Phase I
Public Issue Life Cycle

• Development of brochure, fact sheets, information
  packages time consuming and the printing was
  very expensive
• Development of childrens programs no budget,
  start from scratch
• Parental Exclusion -Young Carers are difficult to
  identify sometimes parents did not want their
  children to be involved
• Self-exclusion Young Carers dont even tell
  their best friends about their caregiving role
  dont want anyone to know

Age of Young Carers Depends on the definition.
YCIN Any child or youth 18 years old or
younger. Some young carers are as young as three
years old.
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MOVING MOUNTAINSHear Me Now Study Phase One

• No Canadian data specifically on young carers.
• The term young carers was unknown in Canada
• The YCIN recruited Dr. Heather Chalmers, PhD,
  Department of Youth and Child Studies, Brock
  University to conduct a study the first one in
  Canada on young carers.
• Results of study public unveiling at FICC-DAT
  (poster session) June, 2007, an international
  conference on caregiving.

Young carers help to care for siblings, a parent,
grandparents, aunts, uncles, other family members.
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MOVING MOUNTAINSChallenges of the Hear Me Now
Study

• Shoestring budget
• Agency approval difficult to obtain
• Brock University Ethics Committee
• Recruitment issues
• Collecting the data
• Time constraints original time-table too
  ambitious/unrealistic

Practical Tasks Outdoor and indoor work,
running errands, paying bills, going to the
bank, getting the mail, mowing the lawn,
household chores
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MOVING MOUNTAINSGetting the Message Out Phase
II

• Post says that in Phase II of the public issues
  life cycle, public awareness broadens.
• The media, the industry and the critics recognize
  the issue has become a significant public health
  concern and important political matter.
• The YCIN concentrated much time and effort in
  getting the message out.

Emotional Support Being the Little Man or
Little Woman of the house. Trying to make
things better.
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MOVING MOUNTAINSPhase II YCIN Communication
Strategies

• Distributed 103 information packages to each MPP
  at Queens Park
• Distributed information packages to all members
  of a Senate Committee on mental health (Senator
  Kirby)
• Spoke to Regional committee on public health
• Distributed over 4,000 brochures, fact sheets and
  other materials
• Made presentations at local, national, and
  international conferences
• Published several articles in local newspapers,
  magazines and nursing journals
• Spoke to local service clubs, boards of member
  agencies
• Made contact with researchers in Canada and other
  countries
• Held family nights
• Spoke on local radio and cable TV
• Joined National Caregivers Association
• Networked with various people across the country
  and beyond
• Advisory Panel for VON Canada Caregivers Portal
  Web Site development

Young Carers are often very mature for their age
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MOVING MOUNTAINSPhase III Involving Government

• Post says that Phase III of an evolving public
  issue occurs when some governmental or other
  formal action begins to develop
• E.G. A regulatory standard, a piece of
  legislation, a government program
• The YCIN hasnt moved this mountain yet

Wally Worrywart How do you get government
involved?
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MOVING MOUNTAINSPhase lV Institutionalizing
the policy action

• Phase lV involves the process of implementing
  the new policy throughout the organizations
  involved.
• This is institutionalizing the policy action.

Dr. Igors Brain Institute Duh How can you
implement a policy that doesnt exist?
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MOVING MOUNTAINSPhase lV Government Policies
Re Young Carers

• Britain has included
• young carers in its Carers Act
• Young Carers are entitled to an assessment in
  their own right
• Britain is moving to a holistic assessment tool
  and an integration of adult and child services
• Canada has a long way to go!

We need to recognize officially that caregiving
is a family event. We need to officially
recognize that Young carers exist in Canada and
they have needs. We need a family systems
approach to assessment.
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MOVING MOUNTAINSWeve got a lot more mountains
to move!!

• The YCIN has evolved into the Young Carers
  Initiative.
• The YCI has its own board of directors and is in
  the process of becoming incorporated as a
  charitable, not-for-profit agency.
• Funding The YCI is seeking funding to carry on
  its work.
• Goals include
• - Spread word across Canada
• - Build public awareness re
• young carers need support
• - Involve government at all levels
• - Start a Young Carers Canada
• Develop a Young Carers Project to provide support
  and services for young cares and their families
  locally. This will be the first one of its kind
  in Canada.

Care Recipients Mother, Father, siblings,
grandparents, aunts or uncles, other family
members. Whoever the care recipient, young
caring is a labour of love.
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MOVING MOUNTAINSThank you all for listening!

• A huge thank you to Marge Dempsey, Director of
  Family Support Services, ASNR a true mover of
  mountains!
• And a special thanks to all the YCIN committee
  members
• A hearty vote of thanks to Dr. Heather Chalmers,
  PhD our researcher from Brock University
• And lets not forget our sponsors such as the Tim
  Horton Foundation
• Thank you to our member agencies

Onondaga Farms A Tim Horton Camp Experience A
chance to get together with your peer group and
have fun!
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MOVING MOUNTAINSYCIN (2004 2006)Member Agencies

• Alzheimer Society of Niagara Region
• AIDS Niagara
• Brain Injury Association of Niagara
• Brain Injury Community Re-Entry
• CAPC Brighter Futures
• CCAC
• Family and Childrens Services
• Horse Alternative Therapeutic Services (H.A.T.S.)
• MS Society Niagara Peninsula Chapter of Hope
• Seniors Community Programs (Regional Niagara)
• Niagara Child and Youth Services
• Bethesda
• District School Board of Niagara
• This is a partial list of the community agencies
  who were involved with the YCIN at some time
  during its two-year existence.

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MOVING MOUNTAINSOur Young Carers

• Finally Thank you to our young carers and
  their families, who are actually living the
  caregiving experience and can teach us so much
  about compassion, love and being human.

Developing bonds at Horse Alternative Therapeutic
Services (H.A.T.S.)