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Congratulations – you’ve made it through the maze of doctors, psychologists, psychometrists, and perhaps even psychiatrists to the testing phase, and have received feedback on the diagnosis/es stemming from the testing. You have a nice, big report to read through, recommendations to the school system for learning aids if a learning disability is involved, recommendations for therapies such as IBI or ABA for ASD/Asperger’s diagnoses, or anything else that turns up in the report. You may feel overwhelmed by all the information there is to process, and unsure of where to start. In Canada, the availability of funding and availability of treatment centres varies widely from province to province, with some having lots of resources, and others being extremely behind in their ability to help your child, both financially and in limitations in the availability of treatment.
I happen to live in Ontario, where it’s been a constant struggle to meet the demand for treatment, and to get the necessary funding some families may require to best assist their child in developing the tools to overcome some of their obstacles. I am not new to the system, however, things have recently changed in Ontario, and some of these changes may mean quicker testing and treatment times, and more funding for treatment. But navigating the waters of where to start and who to talk to can be incredibly overwhelming, particularly in a system that is new not only to you but also to the providers of treatments and funding. Here are a few tips to get you started if you’ve just received a diagnosis, or if you’re looking for more out of your province. *note: the following information focuses on Canadian resources, but some of these points may be helpful to you even if you are living elsewhere.
1 – When you meet with your psychometrist to get the feedback for your child’s testing, make sure you have pen and paper in hand, and take a lot of notes. Ask questions. If you don’t understand something, or want more, don’t be afraid to ask. Things to consider adding to your list of questions should include:
-where can I turn to look for funding for treatment?
-can you recommend any schools that are better suited to meeting my child’s needs?
-can you recommend public and private treatment options?
-what is the most crucial issue that needs to be dealt with at this point in time?
-can you recommend any literature that relates to my child’s diagnosis?
-how do I access resources that may help my child?
-are there any tools that we can use at home to assist our child (and what are they?)
-Can you recommend any support groups for parents and children with similar issues?
Of course you will probably have a lot of questions of your own, but these are good questions to ask, and many psychometrists will be prepared with a list of resources for you. Having said that, it’s difficult for a psychometrist to have a full picture of what’s available to you, what your family’s independent needs may be, or which specific direction to point you in. You may not have insurance that would cover psychological treatments such as ABA therapy. You may move frequently, making it nearly impossible to ever make it to the top of that endless waiting list for treatments. You may live in a more rural community where there are fewer resources. You may be on a very limited budget, or be unable to drive, further impeding your ability to provide your child with the treatment they need. All of these factors come into play in figuring out where to start, who to turn to, and how to get the help your family needs.
2 – Finding the resources you need, even with recommendations from your psychometrist, may still be very difficult, and in my case, it was necessary for me to move to gain better access to resources. In Ontario, for example, it will take you hours, and maybe even days, to figure out how things work. For example, the wait list at CHEO (Children’s Hospital of Eastern Ontario) is at about 18 months right now, and it may even take longer than that to get into the program. The government has just introduced new funding and treatment options for parents who are on the waiting list, but figuring out the process can be pretty confusing. Some of your first steps, if you haven’t already taken them, should be:
And figure out what’s available through the government of the province that you reside in.
Start a ‘Resource Journal’
Of all the possible resources you may be able to access, and their contact information, leaving space to take notes when you speak to someone.
JOIN FACEBOOK GROUPS
That are for the parents of children with similar diagnoses – there are often activities there that have been arranged to get together with other parents and even other children in your situation. Many times, these parents have already been through it and can point you to resources that you may have missed in your online searches.
Apply for the T2201
For a disability tax credit for your child(ren). You may be eligible for the credit, and the child disability benefit pays monthly for children also eligible for the Canada Child Benefit up to $2,730 per year. Even if you think you’re not eligible, apply; you may be surprised. If you are eligible, you will not only be paid for the current year, but may also be paid up to two years back.
Look into the Registered Disability Savings Plan
Do this right away – you cannot take out any money from the fund for ten years, so it’s crucial that you get this started right away. The Government will pay matching grants of 300%, 200%, or 100%, depending on the beneficiary’s family income and the amount contributed. That means that if you put in $20, the government may put in up to $60! Furthermore, The Government will pay bonds of up to $1,000 a year to low-income Canadians with disabilities. No contributions have to be made to get the bond. It’s worth getting a Financial Advisor to help you navigate all of this paperwork, and it won’t cost you a penny. Even if you never put a penny into the fund, the government will grant low-income families $1000 a year, which is deposited directly into the account. The money withdrawn from this fund can be used for anything from education to supporting the individual as they get older. *please note, this is NOT a tax break
Apply for Special Services at Home funding
If you live in Ontario, this is funding that can help you pay for respite care, special education needs such as private instructors including swimming, equine therapy, art therapy, private tutors, and other such services. It will NOT pay for ABA, IBI, or psychometric testing, but having that money to help you pay for these services is truly priceless, and even if you think you make too much to be eligible, you’ll be surprised.
Get on the Waiting Lists!
Whatever province you live in, try to hook up with a social worker who can help you figure out what services are available in addition to the ones you’ve sourced online, and start filling out all those forms. Some agencies will come to your house to help you navigate the paperwork, but if you’re on your own, don’t procrastinate – the sooner you get the paperwork in, the sooner your child will receive treatment.
Look for Other Organizations that May Be Able to Help
Yes, it’s a lot of information to sift through, but there are other organizations that may not have been brought to your attention by your psychometrist, financial advisor, family doctor or pediatrician, and so on. For example, the military provides funding through the MFRC to military family members with ASD/Asperger’s to send them to camp and pay for a one-on-one counselor. They will also pay for psychometric testing in some cases without having to touch your benefits. If you are civilian, there may be benefits you are entitled to through your employer, and community grants that may pay for testing, treatment, and resources such as iPads and software, as well as March Break and summer camp grants and scholarships. (sometimes you will be lucky enough to stumble upon a site where a provincial or local organization holds a lottery once or twice a year for iPads and so on). In some cases, the school your child is enrolled in may be able to provide psychometric testing at no cost to you, and occupational therapy. There are also grants and scholarships for College/University students with a diagnosis of ASD/Asperger’s. The message here is dig, dig, dig, and share, share, share. Even parents who have been navigating the system for years may not be aware of some of the resources out there, which is why the Facebook connection is so important.
3 – Look to your community for activities that may assist your child. For example, if you have a child who has been diagnosed with ASD/Asperger’s, try to find a social activity that they can participate in. Scouting and Guides are two excellent options, but be prepared to hire a Special Services Worker (SSW) or a Child Youth Worker (CYW) who will be dedicated to your child in the case that he/she has an outburst, runs off from the group, or needs a time-out. Even if your child can’t participate in overnight activities, being part of a social group can be very helpful to learning social behaviors. I have a rule – my children must be involved in three types of activities: physical, creative, and social. Gymnastics is a great physical activity for kids that teaches most of the ABC’s of physical activity, and while it can’t replace Occupational Therapy where recommended, it can definitely help them with spatial awareness and body awareness. Swimming is another good physical activity, because it will help keep your child safe around water, and teach them the skills to be physically active throughout their lives even if they later develop physical disabilities (I believe it is necessary for everyone to learn to swim, because even in old age, when knees and other joints may cause limitations to physical activity, water can be very therapeutic). In terms of creativity, this can be anything from music, to theatre, to art, to pottery. Even joining a community lego group can help them develop their creativity.
4 – Take time for yourself. Even if it only means taking a long, hot, undisturbed bath, reading a book, or going out with a friend for coffee, it’s necessary to take care of yourself so that you can take care of your family. I hear you snorting at this one – “when does she expect me to find time for myself?!” but it IS possible. Do yoga videos. Take up a hobby. Whatever you chose to do, try to find time for yourself at least once a day, even if it’s for a 20-minute morning coffee before the kids are up.
I will try to post a limited list of resources by province at a later date.