Finding Help: Post Diagnosis

Disclaimer: This list of services is based on my own experiences.  It's not intended to be comprehensive but to give parents an idea to go.  Please let me know if any of them are no longer helpful.
This is a big list of stuff to do and it can get overwhelming.  Take it piece by piece and give yourself space to deal with the emotional impact as well.

I've divided it up into sections:

Money Related Paperwork
Support Services
Therapy Services
Other Services

Money-Related Paperwork:

First, apply for your Disability Tax Certificate with the CRA.  The form is the T2201 and this lets you claim medical expenses on your taxes, apply for government programs and grants and is basically the gateway for a lot of different programs.  For example, in order to set up a Registered Disability Savings Program, you need a current T2201.  A medical professional must complete part of the form.  Check with your family doctor and the diagnosing doctor to see if they will do it and how much it will cost.  My personal experience is that my family doctor is cheaper and gets the paperwork done faster.  However, you should be prepared for an extended wait.  CRA often takes 2-3 months to process the paperwork, but they will apply it retroactively to birth. 

Special Services At Home:
Special Services provides funding for respite and one on one support (but not therapy) for families whose children are not in residential programs.  It's run through the Ministry of Community and Social Services.  Their funding has been up and down but it's still worth it to get on their waitlist.  They've provided support for us to have a cleaning service so that we can concentrate on helping our children.  Other families use it to offset the high cost of specialized respite care.

Assistance For Children With Severe Disabilities:
ACSD provides reimbursement for the high costs of raising a child with disability.  They don't cover therapy costs and there is an income cap for assistance.  However, they cover a wide range of areas from special clothes and food, respite, prescription drugs, assistive devices, etc. 

Easter Seals Incontinence Grant:
Easter Seals offers a grant for families who have children over 3 years of age who are not toilet trained and have a disability.  It covers diapers, but not wipes, laundry or having to buy more clothes or bedsheets than usual.  It's not a huge amount but every bit can help. 

Autism Ontario Respite Funding:
Autism Ontario offers respite funding for summer programs and March Break programs.  The good news is that therapy programs qualify as a one-to-one program and so the costs for that week can be used to apply for the grant.  The bad news, this is a lottery and parents won't find out if they qualify until after they sign up for the program.  And you have to re-submit for each period.  It usually opens a few months beforehand and is open for a month.  You can sign up for an alert when a new period is coming up.

President's Choice Children's Charity:
President's Choice offers funding for children with developmental disabilities whose family income is $70 000 or less.

Registered Disability Savings Program:
This program enables families to save money to care for their disabled children when they are no longer able to.  Like the education savings program, there are grants and investment matching.  This plan isn't intended for therapy.  There are penalties for removing any funds sooner than 10 years after the last contribution.  This doesn't need to be first up on your list for action, but it is something which you should be considering for the long-term picture.

Support Services

Autism Parent Resource Kit (Ontario)
The Ministry of Children and Youth Services has put together a comprehensive kit of programs and services across Ontario as well as resources such as books and websites.

Service Coordination:
Service Coordination keeps track of the different programs and grants (way better than I do).  They can help you find different programs and funding which you qualify for.  This is a great resource for parents to be in contact with.

Ottawa Children's Treatment Centre provides respite services for families with autism.  Families can sign up to drop off their children at a respite program on Smyth road.  OCTC also can provide support services through social workers and Infant Development workers.

Autism Ontario:
Autism Ontario provides a number of different programs for children and families.  However, sometimes their website isn't entirely up to date, indicating things are being offered which no longer are.  It's best to contact them directly to confirm any programs you're interested in.

Children At Risk:
Children at Risk is another group which provides a lot of different programs.  My personal favourite is that they often get tickets to sporting or entertainment events and offer them to families as part of a lottery.  You have to join in order to take advantage but it can be a great opportunity to enjoy things which you might not have otherwise been able to.

Quickstart Autism Respite:
Quickstart Autism can point parents at a number of resources but they also offer Refresh Restart, where local Ottawa hotels donate overnight stays (usually 1 or 2 days) for parents.  The stays are given out via lottery and parents must sign up for each draw.

Children's Integrated Support Services:
CISS offers support to preschools and licensed daycares to help them integrate children with disabilities between the ages of 6 weeks and 10 years.

Community Care Access Centres:
CCAC offers health care to school age children with disabilities.  They are often used after a client has graduated from OCTC.

Therapy Services

OCTC (publicly funded):
OCTC offers two sets of therapy services.  The first are therapy blocks with speech and occupational therapy.  Usually a family will receive 10 appointments and then have a gap of several months before returning.  The second set of services are blocks of ABA therapy for older children and youths. 

AIPEO (publicly funded):
The Autism Intervention Program of Eastern Ontario is a comprehensive ABA program done through CHEO.  You can apply through the intake process at OCTC or call CHEO at 613-737-7600.  Be prepared for lengthly wait.  It took us over two years before we received services.  However, once we were in, they did an amazing job helping our son.

TIPES (private):
Thinking In Pictures Educational Services (TIPES) offers in home and centre-based ABA programs, as well as other programs, for children with autism.

Portia Learning Centre (private):
Portia Learning Centre offers centre-based ABA programs.  Parents are required to sign contracts with minimum terms of service.

Emerging Minds (private):
Emerging Minds offers home-based ABA programs as well as a parent coaching program.  (Again, a disclaimer, since I work for Emerging Minds, I'm biased.)

Other Services:

Thursday's Child Nursery School:
Thursday's Child offers a preschool program for children 2 to 4.8.  It runs 11 months of the year.

The Applied Behaviour Analysis Center and ABA Press:
ABACNJ offers training in ABA to parents and professionals through online webinars.


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Page Descriptions

Dealing with Diagnosis: Parents talks about the emotional impact of diagnosis. This is a major life-changing event which can leave people feeling isolated, angry and hopeless. You’re not alone in this.

Dealing with Diagnosis: Friends and Family offers suggestions to the extended family and friends of newly diagnosed families. We all want to help and make things better but sometimes the best-intentioned gestures can end up hurting.

Dealing with Other People's Reactions warns of some of the less than positive responses you can expect and talks about the stigma of accepting the "special needs" label.

The Autism World is an explanation of how people with autism experience the world around them. The ability to guess what your child is experiencing is one of the best tools you can have in helping and teaching them.

Tips and Tricks is a collection of suggestions and ideas contributed by parents. I’m always looking for more suggestions to share. Contact me with your ideas.

Choosing Therapies and Treatment isn’t about specific types of treatment. Instead it’s about what you should be looking for in a therapist or treatment expert. Every child with autism is unique and there’s no universal treatment.

Changing Challenging Behaviours is a basic overview of the Applied Behaviour Analysis system. While I recognize that not every child works best with the intense behaviour treatment based on ABA, the system of figuring out what is behind challenging behaviours is an effective way to understand what your child is trying to tell you. Understanding is the first step to trying to change the problem.

Communication offers ideas on how you can help your child with autism to communicate. Without an ability to tell you what he or she wants, frustration quickly leads to behaviour problems.

Referrals for Families are options for families with special needs to enjoy some of the ordinary experiences in life. It lists examples of non-therapy professionals and businesses who are willing and able to adapt to autistic children.

Finding Help: There are three sections, pre-diagnosis, getting a diagnosis and post-diagnosis. It's my attempt to give you a checklist of options.

Helpful Books: A list of books that I've found to be useful, in the order I discovered them.

My Blog is where I share new information, what's working (and not) for our family. Posted daily (mostly).