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Autism Q and A: Transitioning into Adulthood

Jan 30th, 2020

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. 

This blog is for caregivers of autistic adults.

12 min read

 

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:

  1. CLBC
  2. PWD
  3. Transition Planning
  4. Other Organizations
  5. Resources
  6. Frequently Asked Questions
  7. Glossary

What is Community Living BC (CLBC)?

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. 

Personal Supports Initiative or Developmental Disability Programs 

How does CLBC evaluate someone’s support needs?

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:

  • Communication
  • Meeting personal care needs
  • Creating or maintaining relationships
  • Making day-to-day decisions
  • Making important life decisions
  • Safety within community
  • Work and learning
  • Community participation
  • Complex health needs
  • Complex needs and risks” (CLBC, 2020)

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).  
How can I learn more about CLBC? 
Common Questions about CLBC
  • Are CLBC’s policies listed online?  Yes, they are, you can find them HERE 
  • Does CLBC provide Nursing Supports? 
    • No, Nursing Supports are provided through the Ministry of Health.  
  • What if the adult needs toileting supplies? 
    • You can ask for that separately through CLBC.  
  • Does CLBC cover Occupational Therapy or Speech Therapy?  
    • Community Living BC does not have support for SLP, but Occupational Therapy support is provided through Health Services for Community Living (HSCL).   
  • Find a CLBC Office Near You 
MCFD stops being involved with your child at age 19.

What is Persons with Disabilities (PWD)?

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
  • Another person
  • 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. 

For more details, download the PDF here.

Various Programs under PWD
PWD Advocacy 
Transportation 

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).

Adults could receive transportation assistance as part of their PWD designation.

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 from Family 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? 

Yes!

  • 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) 
  • Family Support Institute BC — various online events about transitioning as well as a Transitions Timeline 
  • 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).  

Other Resources

AutismBC Resources 

Frequently Asked Questions regarding transitioning into adulthood: 

  1. When does autism funding end?

    When the individual turns 19 (the month before their 19th birthday).

  2. 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. 

  3. When can you receive CLBC services?

    You can receive CLBC services when you are 19 years of age. 

  4. 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.

  5. 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.

  6. 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.

  7. Does CLBC have a Complaints Process?

    Yes. CLBC Complaint Process (updated in 2022)

  8. 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. CLBC does not offer additional services for those who are Indigenous, rather they are eligible for the same services as all people eligible for CLBC.

  9. Can you use PWD to pay for tuition?

    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.

  10. 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.

    How can I learn more about Direct Funding?  

    Managing the Money – Direct Funding Simplified 

    Managing the Money – Direct Funding Standard Guide 

  11. 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.

  12. Are flags generally temporary or can they be 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.

  13. 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).

  14. 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. 

  15. What about CLBC Respite Funding? 

    Frequently Asked Questions – Family Respite Policy 

    Family Respite Policy 

More Tips 

  • Inquire with your Extended Health Plan to see if your adult child can remain on your benefits.  
  • Negotiate for support, if you are given a certain number of hours of support by CLBC you do not have to accept this first amount.  
  • Ask for different agencies if you don’t like the 3 that are presented to you – see this CLBC Policy “A Guide to Individual Preference” (CLBC, 2018).  
  • 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!

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