Community Feedback – Responses from Families

04/22/2020

To Ministers Conroy and Horgan,

I am writing you concerning funding for my son, who is almost 6 years old. He has both Epilepsy and Autism Spectrum Disorder. He was diagnosed in October 2019 after waiting 16 months on the waiting list. After being diagnosed it took another month to receive our funding and then another month after that to find a Behavioural Consultant who had room on her case load. Once we found a Consultant, it took another 4-6 weeks for them to assess a child and their needs. Our son was only in Week 3 of therapy when the COVID-19 health crisis hit.

Autism funding changes significantly after the age of 6, going from $22,000 to $6,000. This is only 6 weeks away for my son as he turns 6 at the end of May. We desperately need to access the rest of his unused funds as we still have over $7,000 of unused funds. If COVID-19 would have not occurred we would have been able to complete 3 months of behavioural therapy, speech therapy and occupational therapy and would have used all of our funds. But because of this health crisis we are only able to receive virtual parent training and it really is not the same. My son’s main struggles are with communication, daily tasks such as taking medication, and social situations. We have already seen improvements in the short time we have been in therapy.

I am urging you to PLEASE consider rolling over people’s funds over into the following year to help kids like mine. My son is already being set back by this health crisis, as he is not in school and missing out on education and social interactions with his peers and he is also missing out on 12 hours of therapy per week. Please help families like mine in gaining access to the therapy they need by allowing these funds to roll over.

04/22/2020

Our son is diagnosed with autism and is currently 4, and turning 5 this year. Previous to the Covid situation, he was receiving at least 2 hours per day of therapy via the BC Autism Funding. However, current restrictions have limited sessions to a few hours each week of limited parent training and therapy via tele-conferencing, a format that is not ideal anyway for one on one therapy, specially with a child on the Autism Spectrum. Unfortunately, the way the funding is setup, any unused funding is completely lost after August (our son’s birthday), and many other families with children on the spectrum are in the same situation.For us, therapy is an essential service, and much more so as we readied our son to be able to function and learn in the school system, which he will enter next September if everything goes well. Since we lose the bulk of our funding next year when our son turns 6, time is specially pressing to make the most of it.

Our request is simple, and reasonable. Let any unused funding roll over by the amount of months since the situation started to the time it is resolved, so that we can use the funding effectively as planned. However, the Ministry of Children and Family Development has continuously ignored our requests and turned their backs on the people that they are supposedly serving. For how much the NDP campaigns on their support for people with disabilities, the reality that we are facing is that it is all empty rhetoric. We are lucky in that I still have a job and are not taking any of the current government handouts. We are still paying our rent, our credit and our taxes. We are just asking for the service that was promised to be delivered, which is very limited to start with, and that is all. But yet people with disabilities and their families are again left behind, and this time by the people that supposedly said would fight for our rights.

04/20/2020

To Ministers Conway, Horgan and Chow,

Let me begin by saying thank you for everything you are doing for the Province of British Columbia during this unprecedented time. I hope you are your families are staying healthy and safe. COVID-19 has created unique stresses on all people, and vulnerable members of our population are impacted the greatest. That is why I must convey to you my deep disappointment in the support for autism-families like mine during this difficult time.

You – our elected government – have simply refused to provide the necessary flexibility for autism-families as it relates to our Autism Funding Unit (AFU) funding. We are not asking for more money. Instead, we have a simple request. Should we not use all of our funding this year, allow us to carry forward that funding into the next year with no impact to our next year’s funds.

This is critical because autism-parents like me see our children regressing every single day that we are away from the services we access. Not only does my son attend full-time school with one-to-one support, but he also has 1 hour of private speech therapy, 5 hours of behavioural therapy, 1 hour of occupational therapy, and 2 hours of private swimming lessons with a Behavioural Interventionist every single week in normal circumstances. Above and beyond that he has ad hoc interventions with other members of our home-based team like our Behavioural Consultant.Under COVID-19 conditions, my son receives limited structure from 2 working parents who are trying to keep up with schooling while keeping up with our jobs. If you think accessing services during this time via remote working options like Zoom or Teams is the solution, I would encourage you to try to create instructional control over a 7-year-old with Autism from a distance. It does not work.

With flexibility in our AFU funding, we will be able to use the funds we may not access in 2020 towards catching up in 2021 in the areas and skills that regress during this trying time. In my family, we are lucky. We will not allow you, the BC Government to leave our son behind. Whether you provide flexibility or not will actually have no impact on the services that we access for our son. But, I believe it is my responsibility to speak up for people less fortunate than me. I again remind you – we are not asking for any more money at all. We just want all autism-families to have flexibility with their funding for 1-year, that’s all. That will give everyone the chance to catch their children up in critical skills once we are able to access the services our kids need. Is that really too much to ask?

04/17/2020

I am a parent of a child on the spectrum and am trying to navigate therapies and funding in this new era of Covid. Along with many other parents, I am finding that AFU is being very unclear about the changes to the funding requirements, and in some cases making it virtually impossible for families to access their funding.

The two issues of paramount concern right now are:

1. In the Covid Q&A for Parents document released by AFU, it clearly states that parents can sign the JFE forms, accompanied by a supporting email from a service provider when possible. However, many parents are having their JFEs rejected on that basis that they do not have the accompanying support email. This is entirely inconsistent with the rule change AFU themselves stated, and is delaying equipment purchases that are desperately needed during this time (since it takes several weeks to find out their JFE has been denied, and then several more weeks for approval if they are able to resubmit with a service provider’s support).

2. In the Q&A’s for Service Providers document, Question 7 outlines the requirements for service providers to bill AFU for Virtual Care sessions. It states that “Child/youth must have already been assessed by the practitioner in a face to face meeting.” This implies that parents who are unable to access their usual therapies due to Covid and social distancing recommendations cannot access new providers who are able to offer virtual sessions. This makes it impossible for many families to continue therapy during the Covid crisis. My family, for example, cannot continue my son’s previous therapies due to social distancing rules and the fact that the centre offering his therapy is closed during the pandemic. We found an occupational therapist who is able to provide virtual sessions; he was able to lead my son through an assessment via live video using equipment I had at home. Although the therapist was not able to assess everything he would have in a face to face assessment, he was able to gain enough information to make a report and treatment recommendations. Now with the requirements AFU has created for Virtual Care, we seemingly will not be able to continue sessions with this service provider. Furthermore, we won’t be able to have him complete and sign a JFE (or write a detailed email as AFU seems to want) unless we pay for his time out of pocket.

These restrictions are creating a heavy burden on already overloaded parents. I and many other parents have spent hours navigating the vague and every changing statements from AFU, and trying to arrange for alternate services for our children. Some of this may be due to ambiguous statements and poor communication from AFU/MCFD. However, unfortunately AFU’s long waits to speak to someone over the phone or receive a reply to emails means it’s difficult for parents to clarify these new policies (which also seem to change based on who you speak to at AFU).

I would very much appreciate anything your organization is able to do to further advocate for AFU to make reasonable changes that help parents rather than putting up even more barriers.

04/11/2020

For self harming and very challenging kids and youth with autism who really rely on their therapy, why can’t therapists be put on the list of essential services? Why can’t respite care providers also become an essential service for those who really need it? There are lots of families who have several special needs kids in the family and some of them are particularly harmful to themselves or siblings or parents. Those families need REAL help now.

04/11/2020

There are many SN kids who do not get AFU funds because they have different Dxs. They also may not qualify for at home program, or respite services through MCFD. Some of these families are experiencing huge challenges and their SN children need access to supports or else their whole families well being will plummet. Too many SN kids only get supports through Min of Ed or Min of Health in “normal times” – it is craziness that in these unprecedented times so many vulnerable kids are not getting any functional supports. For example a child with multiple Dxs can’t update equiptment they use for vision, and hearing so they can’t access virtual supports.

04/10/2020

Basically no help. Well I shouldn’t say that – if your family was already on the waitlist for respite then some of those families may get respite now which is great. For most families it is nothing. Honestly I’m not surprised. Oh you can use more AFU funds for equipment – if you have the money to buy the equipment up front and wait to get reimbursed. Lots of us don’t. There’s lots of equipment that would help my child but I can’t afford to pay for it upfront. A ton of my son’s funding is about to be gone forever because online therapy doesn’t help us at all. Lots of wasted funding because they won’t roll it over to the next year when I might actually have a chance to use it for him. So now he has no therapy other than what I can provide. Not to mention all the children who don’t get a Autism diagnosis but have huge needs and desperately need therapy and funding. Nothing for them either. Sorry if I sound bitter but after all these years here was a chance for the government and MCFD to do right.

04/09/2020

Well this is very typical. Don’t offer the supports and interventions, then have Child services come in and take your child because they are a risk to themselves and others! All the while they could of helped prevent this and ripping families apart.

04/08/2020

How about they don’t take our child’s funding away and let us get everything they need at home for learning and coping supplies and set up video appts with the BIs? This is insane. The schools get 18 thousand of my son’s funding so how about putting that to good use to home school our children that have special needs in anyway possible????

04/02/2020

I realize these are unprecedented times amid the chaos COVID-19 is causing. I am a mother with HFA from with two little boys. Both my sons are also on the spectrum. My oldest also is Dyslexic and has not yet learned to read despite several hours of one on one support both in school and additional private tutoring. My youngest also suffers from Pathological Demand Avoidance, a disorder that exists under the Autism umbrella and which makes simple asks so anxiety provoking he becomes violent, self harming, hurting others or destroying what is around him.

They are both complex little boys with high needs, with the school closures and the new normal for learning being remote, I fear my boys will be left behind an array of teaching and behavioural strategies are required to engage them successfully in learning. Interacting on screen is often a trigger and thus such virtual learning is not accessible to them. When our private reading tutor transferred to online services, she was the first recommend suspending lessons as this platform would not support my oldest’s learning needs.

During this time when the roles of teacher, EA, SLP, OT, LST, BI counsellor and caregiver fall on the shoulders of parents, it is imperative that we have what we need to support our children as they navigate these new ways of learning and also help them regulate in a time when their worlds have been turned upside down. Without our school and home teams standing beside us, without access to playgrounds and all the sensory inputs of swinging, hanging and climbing that are integral to well-being, without structure, consistency and a lot of unknowns we need more tools.

We need more training. We need more resources to fill these huge voids and create bridges so our children aren’t left behind. Many of our ASD families have ample AFU funding that we are unable to utilize with so many services closed and online continuance is not an option. Many of us will lose this funding that makes it possible for our children to be their best selves, over come their challenges and develop their gifts… gifts our world needs now more than ever. With all of this in mind, I ask that any unused AFU funding please be rolled over into the next funding year so that when the pandemic is finally over, we can gather our teams and raise our kids back up. I also ask that during this time, that parents please be able to access a greater portion of their funding purchase supplies as we tackle home schooling and offer more in home support. I also ask that approval for such purchases please be expedited as we need to start now.

04/01/2020

First of all thanks for advocating for thousands of people who are still trying to figure out how to cope with current situation. I have a 4 years old son with ASD diagnosis, just before the end of sessions due to Covid19, his OT suggested to get him assessed for OCD, he misses his preschool, his teacher and routine, he used to get OT visits twice a week and speech therapy as well We are working to have virtual speech therapy but again don’t have computer/laptop so trying to make it work on mini iPad I really appreciate that you advocated for us to be able to use our funding for devices/materials as closure of libraries have given us no choice but to use screens to keep our kids busy, as closure of swings slides has added to our woes, how to make a four year old understand why can’t he use them? He is obsessed with cars and cans, how to make him not to cry if he can’t go to Walmart/dollar store to get a car/toy? The learning websites are all charging for subscription, I have never worked to give him support and time and my husband currently laid off due to Covid19 how am I supposed to pay for anything other than essentials, I also have a 12 years old daughter who helps me in taking care of my son while I do chores I have nearly 15000 funding till October and look forward to have MCFD positive reply to your letter, meanwhile, our Minister for disability and social inclusion should also come forward and lay a plan for the families like ours who are stressed and in financial crunch.

03/27/2020

I write in support of your recommendations to MCFD and MSD regarding individuals with disabilities and their families during the COVID-19 emergency. I am the mother and primary caregiver to my two daughters. My youngest has multiple diagnosis of ASD, Development Delay, and recently Epilepsy. Despite her doctors best efforts thus far her epilepsy has not responded to medication as anyone had hoped and she has multiple clonic tonic seizures as many as 6 every day as well as partial seizures too numerous to count. I gave up my employment and our lives changed dramatically as a result.

I very recently requested and was approved for respite funding which was rushed through as a priority due to the incredible strain on my family caused by the new epilepsy diagnosis. Given the current COVID-19 guidelines I cannot use the funding for its original purpose. I have an At-Home application which I cannot complete due to social distancing and which without a shadow of a doubt we would have been approved for. My older daughter was receiving counselling through her school and youth and mental health due to trauma witnessing her little sister go status epilepticus and be taken in an ambulance.

We have immediate needs that warrant an extension of her funding deadline at the very least. I’d like to buy her a great big trampoline for our yard while we ride out the COVID-19. My daughter has had multiple life-threatening emergencies due to uncontrolled seizures; including two ambulance rides. The imminent threat of COVID-19 overwhelming our hospital is literally terrifying to me. Both my daughters’ schools are closed and I am somehow going to try to access and deliver them both their online continuation of learning between seizures, administering medications, pull-up changes on top of regular household duties. With all this being said I do not even consider us to be a fragile case as I am resilient, university educated, have a great partner that helps out, and a high tolerance for stress. My beautiful autistic daughter doesn’t experience meltdowns and sleeps well almost every night. Frankly I can’t imagine how families in more precarious situations are managing right now.

03/27/2020

Thank you for advocating on behalf of families with neuro-diverse children. I understand that ACT is compiling a report with parent input to send to MCFD and MSD. This is a particularly challenging time for our families and for our children. Our children are highly dependent on ongoing therapeutic support. Not only are we losing out in private therapy services, we are now also losing out in any supports that would’ve been provided in a school setting. A gap in support is extremely difficult, as there is a loss of continuity and momentum. Service providers are doing their best to move to delivering their services via online platforms. However, our children sometimes don’t respond well to online learning, and not every kind of therapeutic support works well in an online setting. To this end, I would strongly support a rollover of funding to the next year so that we can at least play “catch up” the following year and not lose out on months of support. Thank you for sending our input to MCFD and MSD. We look forward to hearing their responses.

03/26/2020

Our son turns 5 [this summer], so he is heading into the final year of his ASD funding. The current suspension of therapy is devastating for us because it hampers his school readiness. It would be great for provincial ASD funding to recognize the time lost and roll over any unused funding by however many months this lasts. Thanks for your help!

03/25/2020

A lot of us have individually been contacting AFU with those questions. Some have had responses and most not, and none positive. They said it would be considered on a case by case basis, which means families under the most stress, who need help most, probably won’t get it as they don’t have the time and energy to fight for it. Our funding ends March 31, and we have lost that money which had been budgeted for OT and March break camps, which wasn’t much, but it wasn’t “extra money”. We are budgeted to the last dollar. Other families have said that they were just setting up teams and now are back to the beginning.

03/24/2020

Thank you so much for advocating for our children. I just had a question as I noticed the discussion around the funding. My son who is in grade 8 recently started distributed learning. It took quite a few weeks to finally get approved for a Psych Ed evaluation but the assessment was cancelled last week due to offices being closed. The school advised me if it wasn’t done during the school funding period the funding and assessment would not happen. I’m hoping they will extend these school funding periods in order for children to access the services they are waiting for and the funding shouldn’t just disappear as it was allocated to these children. Clearly this is a situation that would involve an exception?

03/23/2020

We are foster parents to an ASD child and can only access our funding through our guardianship worker. We have been unable to access our therapy people, TAP program and our respite due to the recent health concerns within our province/country. How can we as caretakers access these funds?

03/22/2020

Many thanks for ACT’s advocacy to provincial government regarding increasing flexibility around deadlines for autism funding to be spent. I also would appreciate the government allowing me to use respite funding for me as a parent to provide care and therapy to my 15 year old son with Down Syndrome and autism. I still work 3.5 days per week. Our daughter just took the babysitting course. I would like to use either Supported Childcare Funding or Respite funding to pay her to take care of our son while my husband is teaching online and I am also working. Currently I am not allowed to use either of those funding sources to pay an immediate family member who lives in the same household to provide care to our son. Could you also ask for these rules to be changed? I do not have any caregivers during the COVID crisis because we need to self isolate, and caregivers also are not willing to provide care (following CDC guidelines with COVID). I look forward to hearing about the result of your advocacy.

03/21/2020

I would like to see emergency respite funding for Essential Services workers that also have children with Autism. Right now, we are dealing with tremendous stress only to come home to more stress to help our children cope. I am a single mother and work Full time in an essential service and have been on the waitlist for over a year. I do not have the option to stay home., There is no family available to help and even if they do have childcare for essential service I’m doubtful they are equipped to deal the added complications of autism. I was told there was no emergency respite funds available today to help with the caregiver burnout I know is near.

03/20/2020

Thank you so much for bringing these issues up. I have spoken to our special needs social worker for two of our kids and messaged the afu. But the social worker was looking into what could be done to help and afu hasn’t gotten back to us. We have two kids whose funds are scheduled and planned down to the cent per month and both expire in May. That’s 3 months that’s going to waste. Not to mention the horrible crash to schedule right now. Thank you for looking into this and advocating for us.

03/20/2020

Thanks for submitting your list of recommendations to government. I wholeheartedly agree with them. We have two sons [in their twenties], both significantly affected by autism. Non verbal mostly, some anxiety and aggression. Our younger son lives with us, his brother is in a staffed residential home. Both attend day programs and rely on HandyDart. … our income is down to near zero. The day program our boys attend has closed. We have pulled our older son from his group home due to fears about exposure and the developing staffing shortages at the home. My 84 year old parents are quarantined with my mom sick and likely infected. She has a compromised immune system.

We have supplies and a home and are hunkered down together and supporting my parents as best as possible. We have a good personal network of respite providers.

This is what our government and agencies could do:

Step up respite funding to cover the loss of day programs that we can use for respite with our small network, which includes us and family members.

Step up PWD payments to cover the increased costs of supporting our older son out of his group home. Right now 75% of his PWD pension goes straight to the group home.

Provide PPE such as gloves and masks. Gloves are crucial.

Provide cleaning and sanitation products. We have to be extra diligent because we cannot control our kids touching surfaces or their faces.

03/20/2020

We are finding this very difficult. We need to access mcfd funding to buy our son, 13, devices, computer equipment to keep moving forward, therapy aids like lights and swings to keep him moving forward and calm. We have $6000 we can’t access because of rules and need for doctors notes… we use virtual reality to keep him moving and active otherwise he becomes stiff and in pain!! Please help us access our funding. We need to keep our finances to feed him and his siblings but this is extreme unsettling causing huge anxiety and we need aids because we have NO support! As well our daughter 10 is awaiting her assessment which now might not happen!!

03/20/2020

Schools have closed down indefinitely. Hundreds of Education Assistants are now at large. Families of individuals that require a lot of support will start to experience symptoms of burnout. Could the current situation offer relief and an unexpected possibility to connect families with trained and experienced supports (EAs) and those supports with income?

Who/What would be the most appropriate organizations (non-profit/government) that could enter into a discussion about designing a way to connect EAs with families that have children, youth, or adults that have special needs?

03/20/2020

I am a Registered Nurse, the patient care coordinator at a tertiary hospital. I have two boys with Autism ages [under six]. My husband works …. Is also considered an essential service at this time. I need help with my children’s childcare needs and I need to know my boy’s AFU funds will be carried over. This is an urgent need for me, my boys, and the greater community. Please let me know if you can be of assistance.

03/20/2020

Online support is not enough for families who depend on respite staff as part of their safety plan

03/20/2020

Thank you to ACT for sending this letter to the government. In this uncertain time, our most vulnerable need protection.

03/20/2020

It would be very beneficial for families, if disability child benefits were also increased for the time being.

03/20/2020

My child was diagnosed with autism at 18 yrs . We have [only a few months] to utilize all the funding pieces. Is there going to be any leeway on that I wonder? Or on getting help to get the forms all filled out?

03/20/2020

Thank you so much for writing this and thinking of all those affected by COVID-19. I am a single mother of an 18 year old with autism (he aged out of the Child Tax Credit, so we don’t get it) and now that I’m off work due to the pandemic, I have like no money for bills, rent, let alone food. I have applied for regular EI but that’s barely covering my rent as is. I was already living pay cheque to pay cheque and now I’m living day by day. Stay safe everyone. Stay home.

03/20/2020

Thank you for your advocacy! I hope the government takes all these into action. Our under 6 funding runs out the end of April and have much to still be used.

03/20/2020

Thank you. While we are self-isolating as a family and cancelling service providers coming to our home we should be allowed to use an adult family member (older sibling, grandparent) for Behaviour Intervention.

03/20/2020

Thank you for including Adults with Special Needs who live independently. The extra monetary support will certainly help as he is reluctantly staying home from his part time job. I’m trying my best to support my 61 year old brother who lives an hour away while keeping both of us safe during these times!

03/20/2020

Great letter!! To be able to self-use our respite funds and purchase items to keep our kids calm and engaged would go a VERY long ways to preventing burn out. Week 1 is already an insane challenge in our home. Add in work changes and we have nothing to spare to meet the needs of this new reality which looks to be increasingly long term.