Dear Sir or Madam,
I am writing you about the changes in the Ontario autism program and how it will devastate our family and have a profound impact on my little boy’s development and potential for being independent as an adult.
My husband and I (after fostering children for a few years) adopted Levi five years ago from CAS. We were told of Levi’s biological family history in that his biological father had the diagnosis of autism and his biological mother ADHD.
I am 54 yrs old this year and my husband is 18 years my senior and will turn 72 this year. We both work full-time. I work as a registered nurse (for 25 years) and my husband works as a systems analyst at Fleming college as well for 11+ years. We both have health challenges (my husband has recently had to start a 2nd medication for high blood pressure and I was diagnosed with a chronic pain disorder in 2013, the year Levi came home to us) Having struggled with infertility, my eldest boy(19yrs old) arrived later in years and our hopes to grow our family were again realized through the adoption of our youngest son Levi.
Levi struggled from day one at home. Levi received oral desensitizing therapy through the health unit for oral hypersensitivity when he was 15 months old due to intolerance of any food textures.
Levi was diagnosed at age 3 with autism spectrum disorder after I self-referred to 5 Counties Children Centre in Peterborough I brought a checklist of red flags for autism. Levi was diagnosed the same day and full assessments were completed a few months later with ADOS testing to confirm his diagnosis. Levi was then placed on the waitlist and remained on a waitlist for 16 months. We struggled tremendously while waiting for Levi’s turn for therapy. Our home was chaotic with meltdowns, intolerance of changes in routine, difficulties with transitions, night terrors, at risk for running off/wandering, upsets that resulted in physical aggression toward myself and extreme concerns over Levi’s safety as he was jumping off of high heights as he doesn’t understand danger. Out of desperation we reached out to and accepted the direct funding option and looked for private therapy for Levi. (We could no longer wait) Levi began therapy in April 2017 and was initially helped by a novice therapist who was receiving training from a senior clinical therapist. Three months passed and it became apparent that the novice therapist was not following Levi’s programs and not reaching out for help from supervisors and so (she was dismissed) ...we had a false start at his IBI therapy. In July of the same year we began IBI therapy with another therapist. It is very evident that Levi is making better progress and she is running his therapies correctly. Levi was non-verbal but now has a lot of speech albeit some is not functional at times in that he cannot always make his needs known due to limited vocabulary and challenges from stimulation in the environment. Levi now will interact with us and wants to be with us whereas before he would avoid contact with people. Levi loves to laugh and jump and play and he is an affectionate happy boy. I am extremely worried for Levi to have such a significant change in his life... I am worried about regression without the consistency of his therapies. Levi does not yet dress himself or do any self care., and he not toilet trained. Just a year ago this past December Levi has begun to feed himself. Levi is currently receiving in-home therapy 25 hours a week five hours each afternoon. The new funding model would reduce Levi’s therapy hours from 25/wk down to 2 and 1/2 hrs/wk! if that! ....if anything because the new OAP claws back funding starting with incomes greater than 55,000/yr. 2 and 1/2 hours of therapy isn’t enough to make any significant difference as per ABA recommendation. Levi struggles to attend school each morning and receives full-time support while there, if these changes take place he would then need to cope with attending full days. (Recent cuts to special education are going to compound the challenges as well as the hiring freeze for the board of education. Levi also has been recently diagnosed by his supervising psychologist with severe ADHD. Levi’s supervising psychologist has been in this field working with autistic children and children with developmental challenges since the 1970s. He tells us that Levi is probably one of the most severely affected by ADHD that he has seen. Therapies as a result have then been also very challenging for Levi to focus on. We are currently seeking medication to help Levi manage and to help him focus. This has meant that he has not been able to fully “attend” to his therapies as well as he should and even though it has been beneficial it hasn’t been as beneficial as it should be. Levi is very bright he has been reading since he was about three. There isn’t a word that Levi cannot read. Hyperlexia is a trait in 3-5% of kids with autism. He’s currently reading at a grade 4 level although he is in just grade one. Levi has an affinity for academics and I (as well as his psychologists and therapies) suspect that he is perhaps gifted. Levi loves to make videos with his iPad and he loves to act out little skits and perform and record them. Levi however is socially at the developmental stage of a two or three-year-old in some respects. He is communicatively at the level of a two or three-year-old and behaviourally and emotionally at the same level. We see a lot of tantrums, meltdowns and aggressive behaviour. We are concerned for Levi’s safety at all times. There isn’t any time at which he can be left unsupervised either at home, school or out in the community when participating in special needs activities. We often see that when Levi is upset for not being able to fully communicate his needs, he will bang on our glass cabinets with his fists or will kick and hit people (most often toward people working directly with him but especially with me his Mom) throw things, and he cannot regulate his emotions often evidenced by screaming. Levi is having significant challenges with toilet training and isn’t presently able to dress or bathe himself without help. He is now able to feed himself. Levi goes through cycles of being awake in the night and up as early as 3:45 am to start the day. Levi attends our local public school each weekday morning and his therapist(brings his service dog Edgar)to pick him up at noon to come home for five hours of therapy each week day afternoon. Levi’s therapies currently being funded at the cost of $69,000 a year. We still have a mortgage and do not foresee any retirement in the near future due to present circumstances. We will have to consider selling our home (the only home that Levi has ever known and is used to). Even upon selling our own home to purchase a smaller home it is very clear that this will difficult if not impossible due to housing prices at present. We also have recently had our wills completed for a cost of $3500. Wills cost a lot more for families of children with special needs who must consider Henson trusts, RDSP, trustees , multiple “what if“ scenarios etc. Expenses for a child with autism spectrum are also very great as we endeavour to provide Levi with as many sensory experiences as possible ranging from squishy toys water beads and all kinds of sensory items and activities to help him manage and cope with sensory sensitivity of the environment that he’s in. Expenses such as finding the right cup when transitioning from bottle have been great as well. We have purchased as many as 10 to 15 different cups trying to find one that Levi will be able to manage and that is only a couple examples. A supporting worker is necessary for all activities for Levi to participate in special programming which is more expensive as it requires 1 to 1 support. Even if we could sell our house and get a good price, purchase something very practical and small, pay for all of Levi’s therapies what is left over then for our wills to provide for both of our children who have special needs. I also have an older boy who lives somewhat independently in the community. He is currently receiving ODSP for 3 diagnoses, ADHD, Tourette’s syndrome and autism. I manage all his finances remotely through the bank account so that the money will last for the month. My children did not ask to have disabilities they did not ask to have the struggles that they have yet our government is turning its back on the most vulnerable of people who cannot speak for themselves. Some autistic children will live in silence for not being able to learn how to talk ... what a crime this is! I ask you to speak on our behalf and help bring equitable and fair helps for our children. When Levi’s funding is finished at the beginning of May, he will have to attend school full days and be further challenged by being at school for the full day when at present he is having significant challenges staying just for half the day. There are inadequate supports at school although I believe our school is trying their very best for our son but it is simply not enough. Not enough resources. We need trained individuals who are used to dealing with children on the spectrum. Trained individuals with applied behavioural analysis skills to work alongside our children in schools so that our children can be independent and productive as adults. The rates of autism are alarming having been 1/100 kids about 10 years ago is now at the rate of 1/59 kids. ...and if we don’t provide proper supports now, we will have lost a whole generation of individuals who could have been independent but will end up needing supported living in group homes. I have have many friends who are Moms and Dads to children on the spectrum and the struggle is very great.
We want the same things for our children like any other typically developing child is able to have. As an advocate for my child I have participated in multiple parent help programs such as Hanen speech program at Five Counties, Parents CANN workshops through autism Ontario pilot project, visuals workshops (to help my son with communication)and I am presently taking an autism certificate course offered by Kerry’s place. I am doing what I can for my son but it isn’t enough! I have been on 3 stress/medical leaves from work due to challenges with both my children. My eldest boy who is high functioning ASD has in past been cutting himself, has suicidal tendencies etc. that stem from not being accepted and socially isolated.
The new program that is to implemented is both insufficient and ineffective for everyone... not just the 23,000 that are coming off the wait list. When I was on the wait list for funding/ services we were involved with OT, physiotherapy and speech services for Levi through Five Counties Children’s Center here in Peterborough. Families that have been waiting have been receiving some support through blocks of ABA and other community agencies. These families (some of them are my personal friends) would rather wait for meaningful support. A couple hours a week isn’t enough... these kids need repetition and routine. It is heartbreaking that we will not be able to pay for Levi’s therapies. We don’t have a lifetime to pay for his therapies and still have a significant mortgage. It is our firm belief that ALL children of all abilities should receive what they need to become independent and productive members of our society. When a child is diagnosed with diabetes they go to emergency department immediately to stabilize, they receive medication, education and training and full medical support... yet when a child is diagnosed with autism... next to nothing happens! The life-changing therapy that is scientifically proven and evidence based is ABA (Applied Behavioural Analysis) is what works and is the only treatment that will help our kids achieve independence. Do we as a society place less value on a child’s life that is not typically developing? The money for the new OAP should be based on the individual needs of each child as autism is a spectrum disorder and no autistic child is like the other. Some may need intensive support for a few years, some may need 10-20 hrs/ week of therapy and some may just need a few hours. This must be assessed and recommended by a psychologist..We are desperately needing therapy for our child.
Thank you taking the time to gather further understanding of those with disabilities and the families that support them.
Sent from my iPhone
Sent from my iPhone