Our speaker was Douglas Lee, a clinical behavioral psychologist, the Clinical Director at Behavioural Solutions Inc., who as part of his practice, also conducts eligibility assessments for Community Living BC (CLBC).

Dr. Lee played a crucial role in developing the eligibility criteria for Community Living BC (CLBC) programs; he was on committees which established the current eligibility requirements that now apply to Developmental Disability, Fetal Alcohol Syndrome Disorder (FASD), and Pervasive Developmental Disorder (PDD), which includes Asperger’s.  Since the inception of the current PSI criteria by CLBC in 2010, Dr. Lee has been assessing applicants for eligibility for Community Living BC (CLBC) funding and services. He has performed more than 300 of these eligibility assessments.

Square Peg Society requested the following:

• A clear definition of the eligibility criteria for CLBC funding and the documentation required to receive that funding.

• How “level of Adaptive Functioning”, is defined, as PSI funding hinges on this term, and who in our community of high functioning adults is likely to be included or excluded by this definition.

• Is there any intent to review and/or revise the current CLBC eligibility criteria? If so, what changes are most likely to be considered?

• The number of adults diagnosed with Aspergers, particularly females, is increasing. These individuals struggle to find and keep jobs, and social relationships. Without these key aspects of life in place, individuals cannot function as typical adults, yet CLBC funding criteria does not recognize this gap, or consequently, the impact of the lack of funds and services for this group. How is CLBC and our provincial government proposing to assist these high functioning individuals in achieving their full potential?

To receive CLBC funding an individual must meet the criteria for a Developmental Disability, which includes a variety of conditions, and an IQ of less than 70. The other route to CLBC funding is through the Personal Supports Initiative (PSI) program.  For this funding, a diagnosis of either Pervasive Developmental Disorder (PDD) or Fetal Alcohol Spectrum Disorder (FASD) and “significant limitations in adaptive functioning are required. These conditions must have occurred prior to birth, during birth, or in early childhood. For PSI, in addition to a diagnosis of PDD or FASD, the individual must have an IQ of greater than 70, but a Level of Adaptive Functioning of 55 or less. Individuals with an IQ of greater than 70 will frequently have a level of Adaptive Functioning that is greater than 55 (more than 3 standard deviations below the mean of “normally functioning “ individuals), and this criteria will almost always eliminate individuals with Asperger’s. Dr. Lee told us that, when the current PSI criteria was developed, it was intended to include individuals with an IQ of greater than 70, and a Level of Adaptive Functioning less than 70. However, in the midst of the economic climate of 2008, the Level of Adaptive Functioning was required to be lower than 55 to reduce the numbers of individuals who would be eligible for funding. This was entirely an economic decision, not a decision having anything to do with need for services. This criteria disproportionately discriminates against high functioning ASD individuals, who are experiencing difficulty in performing effectively in life and work due a lack of natural ability in interpersonal social skills and communication. Douglas Lee does not believe that the exclusion of ASD or FASD individuals is inherent in PSI structure, but rather that the bar has been set too low to ensure services for those in need. He does not believe that there is any appetite to change these terms; that change can only come through advocacy from the community.

To become advocates for change to this criteria and subsequently, CLBC funding, we would need to form a committee and assign tasks:

• To gather the facts
• To form alliances with other groups, particularly Fetal Alcohol Syndrome Disorder (FASD), and service agencies whose clients are also affected by these
• To gain the ear of media, CBC’s “Go Public”, for example.
• To find a few key supporters in the Provincial Government. (Anyone know of a MLA who has a family who is affected by this issue?) Also, to determine how to frame our “ask”, in order to get a positive response.

The Facts:

We need to uncover the original PSI criteria.  Next we would attempt to determine the number of individuals in BC who received Ministry of Children and Family Development (MCFD) funding prior to PSI funding, and who continued to do so after the institution of PSI, until they aged out at 19, say,  between 2008-2013. We would then compare that number with the number of individuals receiving PSI funding between 2010 -2015. These figures would represent those individuals who were receiving funding until the age of 19, but who were deemed ineligible for PSI funding as adults. The difference between these two numbers would reveal the number of people dropped from funding after the adoption of PSI funding. These people were not suddenly “cured” – simply, the criteria was too restrictive to ensure their continued coverage.

Alliances:

As FASD individuals are also “left out in the cold”, an alliance with this group might increase our visibility. Some of the service agencies are frustrated with the limited provincial funding, and with repeatedly being contacted by people who they are unable to help; they might be willing to partner with us in this advocacy campaign. However, Douglas Lee told us that CLBC employees are expressly told that they are not allowed to lobby government.

The Ask:

The obvious demand would be to raise the Level of Adaptive Functioning bar – to the original less than 70, rather than less than 55, in order to capture more high functioning ASD individuals. Perhaps also we should be asking for assessments other than “level of adaptive functioning” to be included in the assessments. Including assessments that evaluate executive functioning would better represent ASD individuals with lower social and verbal communication skills, and the impact that these deficiencies have on their lives. Asking for inclusion in services already in existence through other agencies, and tailoring some of these to our needs – for example, mental health services – might be attainable. Regular workshops on strategies for coping with anxiety and depression, and on life and social skills would go a long way toward helping our members succeed in work and life.