Transitioning to Adulthood: Transcript of Lisa’s Live Chat Jan 2020
Each month, Lisa our Regional Coordinator for Interior BC hosts a live Q&A on our Facebook Page. During the chat, Lisa, answers questions and encourages other people to add their own ideas/answers and shares resources.
Below is a transcript of the conversation broken down by question.
Q1—Are middle-aged or seniors with autism more likely to lose support?
This is a bit of a loaded question because the supports for adults and older adults that are on the spectrum are definitely a lot less than those provided for children. Some refer to transitioning to adulthood as yet another “cliff” for individuals and families that needs to be overcome. Some adults with autism (on the spectrum/autistic) qualify for PWD services (Persons with Disabilities), some qualify for CLBC (Community Living BC) services and some, unfortunately, won’t qualify for either. I have heard from a few autistic adult friends that they do notice their symptoms getting worse as they get older (e.g. more anxiety, more depression, etc.).
Q2—My daughter recently diagnosed as you know….anyway, she is feeling a little upset about the diagnosis. I am trying to empower her to embrace who she is. I’ve got several books for her to read. Is there anything else you can recommend for me to help her through this? We will be accessing support soon and I am hoping that helps her.
The Autism BC Lending Library also has a wide selection of books. They are free to borrow and we will ship them throughout the province at no cost to you! For more information, you can check out our catalogue here https://www.autismbc.ca/info/library/ . For example, you can research books for various topics/ages (e.g. pre-teen, teen) on our online library and find something right for you.
Q3—Who/what organizations can help with all this transition planning?
Here are some useful links:
Some areas of the province have STADD coordinators who can help with transitioning. However, not in all areas. For example, I’m in Kelowna and we don’t have a STADD coordinator.
ACT (Autism Community Training) has some great resources about transitioning. Link is here.
Family Support Institute BC also has a lot of wonderful resources, including a transition timeline and a free webinar about Representation Agreements and adult guardianship. Link is here.
Family Support Institute also has a PATH program (Planning Alternative Tomorrows with Hope). PATHs help families and individuals create goals for where their life is going and what they want to accomplish. http://books.familysupportbc.com/books/qvlb/#p=32
Also, a link to Representation Agreements and Guardianship with FSI, click here.
Inclusion BC also has some fantastic transitioning resources including a transition guide! Link is here.
Q4—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?
Great question. It is a one-time thing. If you are approved for PWD you shouldn’t have to re-apply (unless your diversability goes away and we all know that autism is a lifelong diversability). If you are qualified for CLBC the same thing. At the age of 19 (could be 18 for the federal government so don’t quote me) you will probably have to re-apply for the disability tax credit (DTC). Again, it shouldn’t be a problem if an individual still has the diversability or their adaptive functioning is below average. It should be noted that if you qualify for PWD you can only make so much per year and can only have so much in assets. Link is here.
Check out the information on assets as well as the information on trusts, very important!
Q5—What is PWD and what is CLBC? What is PWD and at what age does an individual receive this funding?
PWD stands for Persons with Disabilities. If an individual has qualified for the Disability Tax Credit there is a good chance they will qualify for PWD funding. From the government website regarding eligibility, click here.
Okay, so what is CLBC then and when can an individual become eligible for their services?
Please note that not every autistic individual will be eligible. It depends on IQ, adaptive functioning levels among other factors.
From their website: CLBC is the Crown corporation that funds supports and services to adults with developmental disabilities, as well as individuals who have a diagnosis of Autism Spectrum Disorder (ASD) or Fetal Alcohol Spectrum Disorder and who also have significant difficulty doing things on their own. The law that describes our role is the Community Living Authority ACT. To see if you are your family member might be eligible, visit the “Am I Eligible for CLBC”
CLBC is now doing Welcome Workshops in public high schools that introduce families and individuals to what CLBC provides. For more information contact your local CLBC office and ask about their Welcome Workshops.
Q6—What is a Representation Agreement?
From Nidus’ Website (see below). Nidus is there to help people navigate these things, another amazing non-profit organization.
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.
There are two types of Representation Agreements – a Representation Agreement section 7 (RA7) and a Representation Agreement section 9 (RA9). The term ‘section’ refers to a part of the Representation Agreement Act that lists the authorities a representative may have.
An RA7 and an RA9 are different. The one to make depends on your mental capability at the time of making it.
Let’s not forget about PLAN Institute as they also have a wealth of resources including the Safe and Secure free online book that discusses RDSPs (Registered Disability Savings Plans), future planning, Disability Tax Credits, wills and estate planning. They even have inexpensive ($25) webinars coming up about Wills and Estate Planning.
If you are in the Lower Mainland (Burnaby) on January 31st check out this upcoming free Autism BC event.
Q7—I would like to find out more about individuals with autism/OCD rage issues. Can you provide any insight on this?
Thanks for your question. If you go to Autism BC’s Lending Library you can search for some books that discuss both OCD and autism. Also, our Librarian, Allison is amazing at finding relevant books for families. You can email her at firstname.lastname@example.org. Our lending library is free and we ship throughout the province at no cost.
Q8—Hi friends at Autism BC. My Home Share Providers just up and quickly decided to evict/remove me from the practically newer, up-to-date rental home that we just only moved into without willing to allow me (I’m a 56 yo autistic male – somewhat high functioning) more than 24 hours after the relocation. Now after 8 days I finally have most of my personal belongings within reach at my CSW’s house. I’ve been wearing the same two t-shirts, etc. Aside from Home Share Programs/Organizations (I do have a wonderful Home Share Organization already) are there other options if I am seeking my apartment, but we found out that there is not any financial support/assistance past the $716/month if one found this almost the best option?
Lisa: Thank you for your question and we are sorry to hear about your situation. Yes, the $716 per month for housing definitely doesn’t go very far. May I ask which area of BC you are located in? Is your Home Share agency working with you to find something? Is your Social Worker providing you with some supports? If you are with CLBC then they should be working hard to find something. If you aren’t with CLBC then I think it would go directly to the home share agency to find you an alternative housing solution that will fit your budget. I’m sorry that we aren’t able to provide more information to you at this time.
TJ: Autism BC, can I add a footnote to this one? Some communities may have separate non-profit or municipal programs targeting housing expenses. For example, where I live there is a non-profit organization that provides financial support supplements for housing. They are accessed independently by the individual and are not affiliated with the government.
Lisa: TJ, thank you for this information.
N: I’m in the Fraser Valley. My Home Share Agency is working with me with the support of my Family Representative also (she’s my go-between with all agencies). Yes, although this Home Share Provider was my very first ever and everything was somewhat okay – particularly given that we all had only barely relocated to this beautiful newer home, it very quickly escalated to the point that “if I didn’t calm down the police would be called”. (Not a great de-escalation tactic whatsoever.) Thanks for any feedback from others in the community.
Lisa: Are you a client of CLBC? It seems there should be a process for eviction like any other landlord/tenant/property agreement.
Q9—How would an adult find services if they leave BC? For example, a young adult wished to attend post-secondary education in Alberta. Is there some kind of inter-province communication that happens? Services equivalent to CLBC in other provinces?
This is a complicated question and thank you for it. I’ve heard that if you leave BC for a certain amount of time you can forfeit your PWD (Persons with Disabilities benefits). However, I believe this has been challenged when it came to a post-secondary registration in a different province. I can find out more on this topic and get back to you if that is alright? If the individual is a client of CLBC they should be able to ask their facilitator this question. They can also reach out to this wonderful non-profit organization that will help you with financial questions concerning PWD, taxes, etc. http://disabilityalliancebc.org/
Information forwarded to parent after the chat as I received it on Jan 22/20:
Here is a link to the relevant information for people who want to study out of province and continue to receive PWD benefits. Click here.
Here are the important parts from the link for this situation:
- Recipients become ineligible for assistance if they are absent from BC for more than 30 consecutive days per year.
- Prior authorization of the Manager is required for continued assistance for recipients who leave the province for more than 30 days for the purpose of:
- permitting the recipient to participate in a formal education program
- permitting the recipient to obtain medical therapy prescribed by a medical practitioner
- avoiding undue hardship where there are reasonable circumstances to justify this
- All recipients who leave the province for 30 days or more must re-apply for assistance when they return.
- Requests from recipients to continue assistance while out of the province must provide all of the following to the Ministry office.
- recipient’s name and family unit size
- present address
- Social Insurance Number
- amount of monthly assistance currently being paid
- reason for request and confirmation of the proposed program or therapy
- recipient’s future address and estimated date of return to the province
- whether continued assistance is to be partial or in full
- what supplements are requested by the recipient
- what supplements will be cancelled or suspended during the recipient’s absence
- Manager approval must be obtained to provide assistance for recipients who leave the province for more than 30 days. Manager is responsible for:
- approving continued assistance for recipients who leave the province for more than 30 days
- A summarized Authority Level matrix is available in Additional Resources.
TJ: Sure, this just hit me. You think about kids going off to college and then boom, oh yeah, but my kid will need support to live independently.
Lisa: TJ, definitely, I know a few families who have investigated this and can get information to you. If you would be kind enough to email me at email@example.com your email address I can look into this further. In the subject, you can just put FB live.
Q10—Is there a list of places for supportive housing available for young adults on the spectrum, to live in after moving out of parents’ house?
Lisa: K, thanks for this question and this is the question that causes me to worry on a daily basis as a parent. It really depends on how much support the individual needs. If they do qualify for CLBC services they may be able to access housing. That being said there are two streams of service for CLBC, regular stream for individuals with an IQ of 70 or below and the PSI (Personal Supports Initiatives) for individuals with autism and a higher than 70 IQ. If you go on CLBC’s website they do have a section about housing. That being said, it isn’t easy to come by housing. https://www.communitylivingbc.ca/?s=housing
The preferred model, if an individual qualifies for housing, is Home Share.
CLBC has recently put out a survey to find out more about housing views in BC. I would encourage any family member or self-advocate to fill it out. Click here to access the survey.
K: Thanks! We fear he won’t qualify for CLBC services as he can do a job, and is likely going to graduate high school, we are currently awaiting an assessment. He’s in grade 11. But we can’t imagine him being able to live independently at the moment, as he can’t make himself a sandwich and won’t shower without being told. Thanks for the info, will look into it!
Lisa: You are not alone! I hear this from so many families! Individuals that require less supports but still need assistance. Make sure that when you do the assessment you/he makes it appear like his worst day. Can he make a meal for himself if he is stressed? If he has demands placed on him will he remember to take care of personal hygiene etc.?
Q11—Are there any financial supports for Driving Lessons to getting a Driver’s Licence? In BC employment, it is difficult without one.
Also a very interesting question. You can’t use autism funding to pay for driving lessons (at least that I’m aware of). However, if you were to pay a driving instructor as a BI (Behaviour Interventionist) to work on his life skills it may be covered. You would have to inquire directly with the Autism Funding Unit to see if this would be approved. Link is here: https://www2.gov.bc.ca/gov/content/health/managing-your-health/child-behaviour-development/special-needs/autism-spectrum-disorder/autism-funding
To be a BI for someone over 6 you really only need to be over 19 and don’t need any special skills (as scary as that is).
Q12—What does GSA stand for?
Great question! This is from CLBC’s website: https://www.communitylivingbc.ca/how-do-i-get-support/understand-clbc-assessment-tools/
The GSA is a form and tool that summarizes information about disability-related needs in 10 areas of life and evaluates need on a five-point scale. Some of the areas allow for the review of exceptional needs, which are called “flags”. The five-point scale represents a scale that goes from needing no support to needing full support. Most people have different support needs in different areas of life. For example, you could be independent in meeting personal care needs, but need guidance in making important life decisions.
The ten areas of life the GSA reviews support needs for are:
- Meeting personal care needs
- Creating or maintaining relationships
- Making day-to-day decisions
- Making important life decisions
- Safety within the community
- Work and learning
- Community participation
- Complex health needs
- Complex needs and risks
NOTE: It’s important to understand that the level of need identified in the GSA does not guarantee a level of service. This is a guide and other factors include the urgency of the request, the appropriate match of the support for each individual and available funding each year.
My understanding is that a parent/guardian or self-advocate can ask to know what their GSA score is. I’ve heard of some families qualifying for CLBC but not knowing how their loved one scored. The higher the score the higher the needs, it goes from 1 to 5 but you can also have a 4 plus a flag or 2 (kind of like getting a 4a, 4b, 4c). I’m not sure if that is the best way to explain it…..flags are generally given for things like aggression, eloping, medical issues. Again, to find out exactly how the GSA is scored CLBC is the best point of contact: https://www.communitylivingbc.ca/contact/local-offices/
Lisa: Thank you, everyone, for all your questions. I have a bit of research to do but will get back to those of you that I may not have had a complete answer for during this live Facebook chat. If you would like a transcript of this live chat (because sometimes comments get hidden) please email Lisa at firstname.lastname@example.org and I will compile the resources and get an email sent to you by the end of the month.