A provincial action plan released April 17 to help individuals living on the autism spectrum disorder (ASD) has raised concerns for the local Autism Involves Me (AIM) group, says co-founder Joan Chaisson.
“We are really happy to see that they plan to eliminate the criteria of IQ70 from the current eligibility requirements. This would mean eligibility for support services will be based on function need only,” says Chaisson.
The IQ70 criteria was also one of the top factors identified as needing change by the Autism Society of Newfoundland and Labrador (ASNL).
In its 2018 position statement, ASNL called the practice of using an individual’s IQ score to determine required support services was exclusionary and discriminatory. ASNL noted autism is a social, sensory and communicative disorder but not always an intellectual one.
ASNL also identified employment equity as an issue, which includes proper skill development for individuals on the spectrum and proper education for employers. Chaisson and AIM has already been working with the regional business community along the southwest coast to raise awareness and train staff.
“It is fantastic to see that they are planning to expand Applied Behaviour Analysis (ABA) beyond Grade 3 for children and youth up to age 21, and the supporting Abilities Program for adults will encourage supportive employment opportunities,” notes Chaisson.
“I just hope that all parts of government and organizations like ourselves can work together. The confidentiality clause becomes a great roadblock when trying to work with different departments in government.”
Continuity of care from the paediatric system into adulthood is another pressing concern for both groups. The ASNL report stated that 90 per cent of respondents rated consistency in services as of “very high” or “extreme” concern, noting autism is a lifelong diagnosis and that seamless delivery is required across an individual’s lifespan.
Chaisson is of a similar mindset, particularly when it comes to housing.
“This is becoming so important right now. We would like to see apartment-style buildings and not just group homes.
“This would not be just for adults with autism – it would be for anyone with intellectual or social delays who need assistance. We now have such individuals living in senior citizen homes with people who are older than them.
“Also, they are living with aging parents and they are not socializing with people their own age. The government spends all of this money while the person is a youth and then they live in their room at home or in a senior citizen’s home afterwards. This does not make sense to me at all. This is not the answer for these individuals.”
Whatever the answers, it’s clear that both groups believe there is still more work to be done to improve the current system overall.
“Whomever forms the next government, it is imperative that the actions outlined in the Autism Action Plan are followed through in a timely manner and not carried along for another four-year term,” ASNL CEO Scott Crocker wrote in an email to The Gulf News.
“These issues are far too important to families to be made political. They require foresight and a lifelong approach that has not yet been accomplished by a previous government. Autism is lifelong and supports and services need to reflect that reality.”