Table 5 Challenges experienced in interaction with other systems in providing care for individuals with FASD (Top 3 responses)

Primary Care

• No tools for primary care diagnosis and management

• Jurisdictional issues: a) provincial services not available on First Nations Territory; b) multiple health authorities; c) multiple funding sources: d) differing geographical service areas for different services; e) mental health versus medical; & f) lack of trust from communities.

• Mental health systems that work for integration

Parents & Advocates

• Need to have services regardless of diagnosis (behaviours are there and need to be addressed anyway)

• No clear path in accessing services - families are responsible to access and coordinate services

• Constant need to educate everyone we come in contact with (doctors, teachers, etc.) - systems cannot be flexible beyond traditional models

Allied & Mental Health.

• Waiting lists growing with insufficient resources

• Systems saying “I don”t have the expertise to deal with the child with FASD” - using information about FASD as an exclusion criteria; (e.g. daycares, medical/mental health services, programs, schools, etc.)

• Advocacy role for the individual and his or her family in a system that doesn’t share information, in a system where there may be a huge lack of continuity of care

Education

• Keeping kids in school, developing productive contributing citizens…Core curriculum, work experience, life skills, advocacy, core credits for high school

• Privacy/advocacy/gatekeeping/wrap around support/ multiple system contact, little or no communication between systems

• Knowledge base and development of appropriate strategies to support: paradigm shift, reframing, professional development and behavioral strategies

Government & Policy

• Could systems be more adaptive and responsive to people with FASD who don’t fall within usual parameters of programming available?

• System navigation/coordination - hard for families to find what they need, lack of communication between systems

• Needing a diagnosis as a prerequisite to service

FASD Regional Coordinators

• Lack of rural services and services on First Nations Communities

• Length of Waitlist for an assessment

• Program eligibility criteria (e.g., a) mental health ineligible with FASD diagnosis (in some regions); b) Children’s Disability and Community Living IQ 70 or less, school support

Social Services

• Eligibility Criteria/Coordination - Criteria for many services don’t apply to many individuals with FASD (e.g., IQ, etc.) and when individuals are eligible for services the systems are not working together.

• Lack of preventive and supportive services (e.g. respite, in home support, housing, etc.) especially in rural and northern regions. Services that are available are typically set up for short term supports even though families dealing with FASD require services throughout the lifespan.

• Long wait lists for assessments and services

Criminal Justice

• Need for more information on FASD & related disabilities and ability to communicate effectively with individuals with FASD

• Constant need to educate medical and non-medical contacts about FASD

• Limits in Criminal Justice System – require supports from other systems.