What happens when your autistic child turns 19 in BC?
This blog is full of resources to help with funding changes associated with transitioning into adulthood. There are also more acronyms so we’ve included a glossary as well.
At Age 19, the Ministry of Children and Family Development (MCFD) stops being involved with your child. Wonder what happens when their funding changes? At that point, your child may qualify for Community Living BC (CLBC) services and/or Persons with Disabilities Benefit (PWD). Do you know what kind of supports Community Living BC (CLBC) provides? Do you know if your adult child is eligible for PWD? What organizations provide help to caregivers throughout the process? We have summarized all the information into an easy-to-navigate list of resources and answer some frequently asked questions to help ease your feelings of confusion and overwhelm:
CLBC is the provincial crown corporation that provides support and services for adults with developmental disabilities, Autism Spectrum Disorder (ASD), and Fetal Alcohol Spectrum Disorder (FASD) with significant difficulty doing things on their own (CLBC, 2018). Check out your eligibility for CLBC support here.
Do you need to have an updated psych ed or adaptive functioning assessment before qualifying for CLBC services?
For the most part, yes; however, if the last assessment was done within the last few years then you may be able to use that one. It will depend on the individual’s diagnosis and IQ. The best thing to do is to contact CLBC and find out what is required before transitioning.
If your child is with a distributed/open learning centre, the organization may be able to pay for the cost of an assessment.
CLBC Eligibility Information — eligible if a Developmental Disability or through the Personal Support Initiatives Stream (see below for details) at the age of 19.
CLBC uses a tool called the Guide to Support Allocation (GSA). GSA summarizes disability-related needs in 10 areas of life and evaluates them on a five-point scale that goes from needing no support to needing full support. Exceptional needs can be reviewed in some areas, and these are called “flags.” Everyone has different needs in different aspects of their life. You might be independent in meeting your personal care needs, but need guidance in making important life decisions.
“The ten areas of life the GSA reviews support needs for are:
Identifying the level of need in the GSA does not guarantee a level of service. It is a guide, and other factors include urgency, matching support for each individual, and available funding” (CLBC, 2018)
How does CLBC determine the urgency of a request for supports?
CLBC uses the Request for Service Priority Tool (RSP) to assess the urgency of a request for funded supports. The tool takes into account the person’s current situation as well as their family. With the tool, CLBC can make sure decisions are fair and help as many people and families as possible.
“This tool looks at risk in areas like:
Risk associated with current living situation
Risk the person faces for abuse, neglect, physical harm
Extent an individual is limited to access home and community
Level of support required to be safe
Vulnerability to financial exploitation” (CLBC, 2018).
In British Columbia, adults can apply through the Ministry of Social Development and Poverty Reduction, to become a monthly recipient of up to $1,358.42 of PWD income assistance. If you have qualified for the Disability Tax Credit there is a good chance, you will qualify for PWD funding.
“To be eligible, you must:
Show that you meet financial eligibility to receive assistance
Be 18 years old (you can start the application process when you are 17 ½)
Have a severe physical or mental impairment that is expected to continue for more than two years
Be significantly restricted in your ability to perform daily living activities
Require assistance with daily living activities from
An assistive device, or
An assistance animal
Please be aware that someone receiving PWD can only make so much per year and have so much in assets. When doing estate planning for your family be sure to consider this and consult with a legal professional regarding estate planning and trusts.” (Government of BC, 2020)
What if the medications prescribed aren’t covered through the PWD medical benefits?
Family doctors can write a Special Authority letter that can cover the cost of prescription medications that may not have been covered by PWD benefits otherwise.
According to BC Bus Program, you receive transportation assistance as part of your disability assistance if you have the PWD designation. You can either get a bus pass or money added to your disability payment. You may also qualify for receiving Fuel Tax Refund.(Government of BC, 2021).
Transition Planning and Support
How can I continue to support my adult child in making important decisions in his life?
By signing a Representation Agreement, you can continue to represent your adult child in financial, legal, and health decisions if they require support in those areas.
According to Nidus, “A Representation Agreement is the key legal document in British Columbia for personal planning/advance care planning. It is a legally enforceable document and used in case of incapacity, for end-of-life, and other support needs. You must be an adult (19 years or older) to make a Representation Agreement.
A representative has the legal authority to help you manage your affairs and carry out your wishes if you need temporary or ongoing assistance—due to illness, injury or disability.
A Representation Agreement is the only way to authorize someone—called your representative—to assist you or to act on your behalf for health care and personal care matters. Some might use a Representation Agreement to cover routine financial affairs and legal matters.” (2020)
Watch this free webinar fromFamily Support Institute BC on Representation Agreements and Adult Guardianship.
Are there organizations that can help me with some of the planning associated with transitioning into adulthood?
Disability Alliance BC — can help with applying for PWD (Persons with Disability), DTC (Disability Tax Credit), RDSPs (Registered Disability Plans) as well as filing income tax returns.
STADD — Services to Adults with Developmental Disabilities
“STADD services cover the youth transition period from 16-24 years old and include a cross-government approach. CLBC provides specific supports to youth transitioning to adulthood, and can be life-long, beginning from age 19” (CLBC, 2018)
Inclusion BC Transition Planning Workshop Guide— Since 2011 Inclusion BC’s Transition Planning Workshop has been presented to families in communities throughout the province. This guide is a valuable accompaniment to the workshop or, used on its own, can help prepare a student for life after high school.
MyBookletBC — “MyBooklet BC is A FREE online tool that families and people with disabilities can use to create a beautiful and personalized information booklet for a loved one or for themselves” (MyBookletBC, 2020).
More Organizations that Support Adults
posAbilities offers a menu of services that grow and change in response to the needs and wishes of our persons served and the families who care for them. We specialize in assisting people with developmental disabilities with life’s transitions – to and through adulthood, (posAbilities, 2021).
Easter Seals Compass Program — “The Easter Seals Compass Program is here to help young adults with diverse abilities live as independent, empowered adults.” (Easter Seals, 2020).
Special Olympics BC provides high-quality year-round sports programs and competitions that help people with intellectual disabilities celebrate personal achievement and gain confidence, skills, and friendships (Special Olympics British Columbia, 2021).
CAN — “Canucks Autism Network’s Adult programs provide the opportunity for you to have fun, meet new people in your community, and develop new skills in a variety of settings. All programs welcome all abilities. Areas of focus include social and life skills, employment and volunteering, physical and mental health, arts and technology,” (CAN, 2021).
Pivot Point Teen Transition Planning – Fee for Service – “Any teen age 13 or older (either neurotypical or with Autism or Diverse Abilities) who is seeking guidance, inspiration and focus to help ensure a more successful journey towards adulthood. Or for any adult seeking more direction and preparation for an upcoming change,” (Pivot Point, 2022).
Launch into Life The Sinneave Family Foundation has developed the Launch into Life program to help families prepare for key life transitions. It is focused on discovering personal strengths and areas for growth based on an individual’s interests, abilities, and needs. Find out more here.
Check out this website for links to videos and written materials that focus on the transition to adulthood.
Vela (Microboards) – “A Microboard is a small (micro) group of committed family and friends (a minimum of 5 people) who join together with a person with a disability to create a non-profit society (board). Together, they help the person:
CAYA is “Communication Assistance for Youth and Adults” and is a service for 19+ who require AAC devices to communicate. Most students who have AAC Communication devices in schools are transferred to CAYA when they are nearing the end of their Grade 12 year” (CAYA, 2021).
Individualized Funding Resource Centre — “The Individualized Funding Resource Centre (IFRC) Society was developed to help people succeed on the Choices in Supports for Independent Living (CSIL) Program and other individualized funding programs in British Columbia” (IFRCS, 2021).
Frequently Asked Questions regarding transitioning into adulthood:
When does autism funding end?
When the individual turns 19 (the month before their 19th birthday).
When does At Home Funding end?
17 years or younger for AHP Medical Benefits; 18 years or younger for Respite Benefits through At Home Program.
When can you receive CLBC services?
You can receive CLBC services when you are 19 years of age.
At what age can a family/youth contact CLBC to open a file?
Age 16 is when we can complete an intake for eligibility. We usually start to plan with a family around 17.5 years of age, and we do encourage families to attend the Welcome Workshops to get more information prior to facilitator involvement and planning. Families can call their local CLBC office to ask for their names to be added to the Workshop series.
When can you receive PWD?
You can receive PWD when you are 18 years of age. However, if you are a child in the care of the Ministry you can not receive PWD until 19 years old.
If a person is approved through PWD or CLBC, is this a one-time application or do you have to renew/reapply at some point in time?
It is a one-time application. If you are approved for PWD or qualified for CLBC, you shouldn’t have to re-apply, unless your diverse ability goes away, but autism is a lifelong condition.
Are there additional supports for people that are indigenous and eligible for CLBC?
There may be additional support available through the Band, such as medical or dental, etc. There may also be resources available through Indigenous Services Canada. These resources can be explored during the planning process with a facilitator.
PWD is a personal income and can be utilized for anything, such as rent, bills, food and other necessities. There are also grants and scholarships available that are sometimes listed on our website.
Where can I find the description for CLBC Funded Agency or Host Agency or the hybrid model?
The Host Agency Funding Policy is on the website under the Individualized Funding Policies and Supporting Document tab – keep scrolling past Direct Funding and you will find the section. Hybrid models can be discussed with the facilitator through planning as they can be unique and specific to an individual.
Can the GSA score go up and/or down depending on an individual’s support needs at a certain time?
The GSA score doesn’t typically change. The GSA is constructed in a way where the support needs do not ‘carry over’ into the other sections. So, if a support need changes, it corresponds to a specific section. The Level in that section may increase, or decrease, but that doesn’t usually change the overall GSA Level. Any requests to review a GSA are to be approved by management.
What are ‘Flags’ and are Flags temporary or permanent?
Flags can be either ‘Acute’ (temporary), or ‘Ongoing’, based on what exactly is going on for the individual during a point in time. Flags are also only considered when an individual has ‘exceptional’ support needs which are above and beyond what is reflected in the GSA section. Flags can include Personal Care Needs,Creating and/or Maintaining Relationships, Safety within Community, Complex Health Needs, Complex Risks and Actions.
What does the CLBC Facilitator do?
“A person called a facilitator is your main contact at CLBC. A facilitator will tell you if you are eligible for CLBC support. A facilitator can help you plan for changes in your life. This might be when you become an adult, when you get older, or if you have an unexpected urgent situation. A facilitator can explain CLBC funded services and help you to request them” (CLBC, 2018).
What does the CLBC Analyst do?
An analyst is a liaison to the service providers. They are responsible for contracting, negotiations, monitoring, ensuring service quality and service delivery. They also work with families who have IF contracts and assist them to understand their contractual and reporting requirements.
Unfortunately, you or your child will have to describe how independent your child can be when they are struggling, and/or you are not there to assist them. Although we as caregivers/parents want to highlight our child’s achievements this is not the time. It is important to present a worst day scenario when going through the eligibility process.
Information gathering begins from the time of first contact with a CLBC Facilitator. You may think the first contact is solely a “meet and greet” it is also information gathering.
Even a bad decision is considered the ability to make a decision and some level of independence.
Glossary of Key Terms
CI — Community Inclusion
CLBC — Community Living BC
CSIL — Choices in Supports for Independent Living
DABC — Disability Alliance BC
DD — Developmental Disability
DTC — Disability Tax Credit (Federal)
Gap Year — the year your child turns 18 and gets PWD services but doesn’t get CLBC services until 19
GSA — Guide to Service Allocation(Tool used by CLBC)
IF — Individualized Funding“Money is allocated by CLBC to an individual or their agent (eg. family member) to enable them to arrange and pay for individualized supports and/or services to meet the individual’s disability-related needs. This option is an alternative to, or in addition to, accessing contracted services” (CLBC Policy, 2013).
PRT — Request for Service Priority Tool(Tool used by CLBC)
PSI — Personal Support Initiatives“CLBC services for individuals who have both significant limitations in adaptive functioning and a diagnosis of Fetal Alcohol Spectrum Disorder (FASD) or Autism Spectrum Disorder (ASD)” (CLBC Policy, 2018).
PWD — Persons with Disabilities Benefit (Provincial)
RDSP — Registered Disability Savings Plan
Do you know of a resource that should be on our list? Please reach out here and let us know!
AutismBC Talks with Community Living British Columbia (CLBC) about SERVICES and ELIGIBILITY
We will be talking about:
– how CLBC supports autistic adults
– what support looks like
– how CLBC determines eligibility for support services
– what is the process/criteria to access support in BC
Who We Are Talking with:
Catriona Johnson is the new Manager of Policy and Government Relations at CLBC and has worked in the community living field for over 25 years in both Canada and the US. Catriona has an adult son with autism and is the former Chair of both the Howard County Autism Society and the Autism Society of America’s Government Relations Committee. She has a Masters in special education from Johns Hopkins University
Susan Fasse is the CLBC Eligibility Facilitator for the Vancouver Coastal West Region (Vancouver, North Shore, Sea to Sky Corridor, Sunshine Coast and Powell River). She has worked for the Provincial Government for over 22 years and, specifically, CLBC since 2008. She was the Personal Support Initiative facilitator for this region when the program first started in 2012.
Patrice Struyk is a CLBC Policy Analyst and CLBC’s Provincial Eligibility Lead. She provides policy and practice guidance to internal and external stakeholders, including CLBC staff, management and the psychologists with whom CLBC works. She has graduate degrees in the arts, where she developed her research and communication skills. She has worked in social and disability services and policy for 20 years.
Autistic Adult Support with CLBC's CEO Ross Chilton
Lindy talks with Ross Chilton, CEO, of Community Living British Columbia (CLBC).
We will be talking about:
- how CLBC supports autistic adults
- what support looks like
- what is the process/criteria to access support in BC
Ross is a long-time leader in British Columbia’s community living sector and brings extensive experience advancing inclusion in social service agencies and on sector boards.
From 2007 until joining CLBC in 2019, Ross served as CEO of Community Living Society (CLS), which provides services to individuals with developmental disabilities and families across Metro Vancouver and the Fraser Valley. At CLS, he helped expand employment and support options, and formed the Community Living Housing Society to support innovative, inclusive housing solutions. Ross has previously served on several boards including the Family Support Institute, the BC Non-Profit Housing Association, the BC CEO Network and Steps Forward.
Ross holds a Master’s degree in Counselling Psychology from the University of British Columbia and has worked as a counsellor and vice president for the Interlock Employee Assistance Program. Ross is also the parent of an adult son with developmental disabilities.
Transitioning into Adulthood
Monique Nelson, (Parent, and Director of Community Engagement for posAbilities), Rachel Goddyn, (Family services consultant from BACI)
Jules Wilson and Meaghen Taylor Reid (STADD Navigators), and Joette Heuft (Square Peg Society) talk about their professional and lived experiences on the topic Transitioning into Adulthood for young autistic adults.