ACCESS TO SERVICES: South Asian Families with Special Needs Children

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ACCESS TO SERVICESSouth Asian Families with
Special Needs Children

• SATWINDER BAINS
• Centre for Indo Canadian Studies
• UNIVERSITY OF THE FRASER VALLEY
• CHILD AND YOUTH HEALTH RESEARCH NETWORK
  CONFERENCE
• HARRISON HOT SPRINGS
• NOV 2- 3 2009

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ACCESS TO SERVICESSouth Asian Families with
Special Needs Children

• Our worst crime is abandoning the children,
  neglecting the foundation of life
• Gabriela Mistra
• Lucila de María del Perpetuo Socorro Godoy
  Alcayaga, a Chilean poet, educator, diplomat, and
  feminist who was the first Latin American to win
  the Nobel Prize in Literature, in 1945

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ACCESS TO SERVICESSouth Asian Families with
Special Needs Children

• May Sept 2009 Project
• Funding Acknowledgement
• Child and Youth Health Research Network Seed
  Development Grant
• Location University of the Fraser Valley,
  Abbotsford, BC
• Partners- FV Child Development Centre
• - Mission Community Services
• - Community Living BC
• - Mission Assoc. for Community Living
• - Parent

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ACCESS TO SERVICESSouth Asian Families with
Special Needs Children

• Project goals
• Develop a rationale for research areas in the
  South Asian community of families with children
  who face developmental issues and their
  challenges to access and utilize services.
• Conduct a literature review to assist in framing
  questions that are culturally relevant,
  appropriate and significant for the constituents.

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ACCESS TO SERVICESSouth Asian Families with
Special Needs Children

• Supporting vision of CHRYNet
• Create and sustain responsive relationships among
  researchers, decision makers, service providers,
  and children, youth and their families
• Multidisciplinary team approach to the research

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ACCESS TO SERVICESSouth Asian Families with
Special Needs Children

• Methodology
• UFV Ethics Review
• - Community Case Study client review
• - Informal survey
• - Focus Group
• - Questionnaire
• - Literature Review
• 2 focus groups of mothers
• 12 bilingual questionnaires administered

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ACCESS TO SERVICESSouth Asian Families with
Special Needs Children

• FINDINGS
• 1. Lack of awareness by families about
  information on services
• - families find out too late to access services
  lost time
• - sponsorship network lacks knowledge and
  information
• - lack of community response to information
• - information usually sourced in crisis
  situations
• - prevention programs are ignored or
  under-utilized
• - extended family may be unaware of depth and
  breadth of needs
• - lack of social/cultural support for special
  needs

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ACCESS TO SERVICESSouth Asian Families with
Special Needs Children

• 2. Confusion/apathy about services
• - newer immigrants and those with language
  barriers
• - who offers what, what does the program mean,
  what is the referral process, what is required to
  join/receive services
• - service concepts are foreign (design might not
  meet expectations or comfort)
• - clients require extensive outreach and
  negotiation (not always available)
• - when negotiation is available, the service
  provider is swamped with requests (of all kinds)
• - personal empowerment takes time, energy, money
• - service providers spend larger amount of time
  with such clients

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ACCESS TO SERVICESSouth Asian Families with
Special Needs Children

• 3. Diversity of needs unassuming immigrant
• - difficult to articulate, conceptualize the
  extent of needs and services
• - even more difficult to demand appropriate
  services
• - great passivity in voice and demand
• - immigrant experience not clearly understood
• - lack of supportive networks (families with
  similar needs)
• - stigma attached to special needs within
  extended family/community/home country

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ACCESS TO SERVICESSouth Asian Families with
Special Needs Children

• 4. Services for children as adults
• - apprehension and fear about what happens when
  children turn into adults
• - lack of information about supports for
  transition
• - lack of awareness of parental role in transfer
  to adulthood
• - lack of parental advocacy and planning ahead
• - feelings of we will cross that bridge when we
  get to it

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ACCESS TO SERVICESSouth Asian Families with
Special Needs Children

• 5. Advocacy for children lacking
• - families not advocating for childrens needs in
  a coordinated or supportive manner
• - need expressed for supportive networks
• - need to fight stigma of special
  needs/disability
• - demand for culturally appropriate services is
  lacking
• - champion for culturally relevant and
  significant services needed
• - service providers slow on the uptake to provide
  linguistically and culturally relevant/appropriate
  /signficant services for distinct cultural groups

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ACCESS TO SERVICESSouth Asian Families with
Special Needs Children

• 7. Reliance on families to provide help
• - families rely on each other to provide help
• - families do not actively seek out
  agencies/services
• - services are not effectively utilized
• - information is gathered by asking family
  resource persons, then the doctor or other
  professionals
• - due to stigma, certain specials needs are kept
  hidden from some family members due to perception
  of long-term repurcussion
• - active seeking of services was limited in its
  scope

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ACCESS TO SERVICESSouth Asian Families with
Special Needs Children

• INFORMAL SURVEY
• n37 surveys in English (E), n21 surveys in
  Punjabi (P)
• Knowledge of Child Development Centre YES E
  72 P 38
• Need to know about services
  E 78 P 90
• Sources of information for services
• - bilingual newspaper E 45 P 57
• - school newsletter E 32 P 23
• - Temple E 11 P 57
• - FVDC website E 32 P .09
• - Doctors office E 24 P 23
• - local radio station E .13 P 33

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ACCESS TO SERVICESSouth Asian Families with
Special Needs Children

• CLIENT DATA FVCDC
• Total children served /PS Punjabi speaking
• 2006-2007
• 0-3 781/24 PS 3-6 576/27 PS 6-18 647/30 PS
• 2007-2008 (Indo Canadian outreach worker hired)
• 0-3 752/45 PS 3-6 811/34 PS 6-18 702/31 PS
• 2008-2009 (to Sept 1, 2009)
• 0-3 747/43 PS 3-6 837/40 PS 6-18 720/32
  PS

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ACCESS TO SERVICESSouth Asian Families with
Special Needs Children

• FINDINGS of LITERATURE REVIEW
• - Inequities are definitely faced by South Asian
  community
• - Disadvantages faced in housing, employment,
  transport, income, education, health and social
  services
• - Assumptions about extended family support
  systems - rendering families invisible and
  neglected Source, extent and type of supports
  (parenting, stigma, knowledge)
• - English language a major barrier (spoken is
  greater)
• - Inappropriate housing and equipment, limited
  access to service providers and supports
• - Transport 1/2 caregivers do not drive
• - Delay and difficulty in accessing benefits e.g.
  respite
• - Lack of awareness, inefficient services,
  racism, stress,
• - Imbalance of power relationships with service
  providers

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ACCESS TO SERVICESSouth Asian Families with
Special Needs Children

• Contd
• - Disclosure has different impact on South Asian
  families
• full disclosure, shared acceptance (both
  parents), lingusitic capacities, offer of
  supports, high level of emotional support,
  childs value is high-lighted, be patient
  answer all questions and those that have not been
  asked
• - Maximization of services model linguistically
  and culturally appropriate, significant and
  relevant and evaluation of services is built into
  the model
• - Three improvements Information, support and
  care
• - No segregation of services
• - Awareness of barriers by service providers and
  greater collaboration with families

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ACCESS TO SERVICESSouth Asian Families with
Special Needs Children

• FURTHER RESEARCH
• How do South Asian families effectively access
  information and utilize services to meet the
  needs of their children with special needs?
• What is the nature of services and how can they
  respond more effectively?

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ACCESS TO SERVICESSouth Asian Families with
Special Needs Children

• QUESTIONS???
• THANK YOU
• - satwinder.bains_at_ufv.ca

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ACCESS TO SERVICESSouth Asian Families with
Special Needs Children
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ACCESS TO SERVICESSouth Asian Families with
Special Needs Children