OTTAWA AUTISM CONNECTION

Navigating the Autism Services Maze in Ottawa A Review and Guide to Newly Diagnosed Parents Living in the City of Ottawa

2010

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WWW.OTTAWAAUTISMCONNECTION.COM

Preamble: The advice in this document is based on experiences of the author and assumes a diagnosis of classic autism or PDD-NOS and not other Autism Spectrum Disorders (ASD’s) and assumes the reader resides in the City of Ottawa, Ontario, Canada. This is a living document, and may change over time.

When you first suspected something was different about your child you also wondered how best to help them reach their full potential. While education based behaviour therapy, such as Intensive Behaviour Intervention (IBI), remains the only proven therapy for autism, other therapies such as speech and occupational therapy are also available and all of these are at no cost. Here’s how to get access to these services, estimate on how long the wait is for these services, or fund private services while dodging the bureaucracy as much as possible.

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Getting the diagnosis (No Cost): The diagnosis of autism spectrum disorder (ASD) can obtained through the Ottawa Children’s Treatment Centre (OCTC). The wait for assessment through OCTC is about 6 to 8 months. Your family doctor should make the referral, but parents have reported certain area pediatricians will not do this. You can do this yourself by calling OCTC and asking to arrange a meeting with their developmental pediatrician. During the assessment, a social worker will be present for part or all of the meeting. The idea behind this is to connect parents to resources, depending on the outcome. The experience of many parents is that this person is NOT fully able to direct parents to these resources, other parents in our community benefit from the case worker. However, after the meeting comes a crucial part. While you may be grieving the diagnosis, you will be required to sign paperwork and answer questions to receive services based on your family situation. These documents get your child on waiting lists for services as well as a disability tax credit. It’s impossible to keep a clear head at a time like this, so it’s recommended you have a support person with you to help you keep composed. Whether that’s a spouse, a parent or a close friend, and they may also be able to help you articulate or elaborate on your concerns to the developmental pediatrician. This person can also help you deal with the case-worker, who may not be aware of or may omit information you will need to know. Case-workers can be very hard to get a hold of after the fact, so having another person to ask them questions can help. Getting the diagnosis (Private): The diagnosis can also come from a qualified psychologist or developmental pediatrician (note: certain area pediatricians reportedly refuse to diagnose or acknowledge the existence of autism). The cost of this private diagnosis through a psychologist is approximately $1,600, but this can vary. The wait-time can be about 6 weeks. There is some confusion within the bureaucracy (AIPEO) and larger community whether privately obtained diagnoses are accepted and this can cause unnecessary delay. However you as a parent are well within your rights to obtain a private diagnosis, and use it. Especially if you are considering IBI, the current public wait-time of 1-3 years, post-diagnosis, is unacceptable for an “early intervention”. Some private service providers do not require a formal diagnosis, which is especially useful if the delay is more generalized, or can provide an opportunity to obtain a private diagnosis through partners with qualified assessors. Getting a private diagnosis can eliminate the 6-8 month wait for OCTC to do it.

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AIPEO’s Initial Assessment and Follow-Up Assessment: AIPEO’s assessment can be un-nerving for parents. You and your child will be in a room with a camera and toys. You’ll also find yourself waiting for a while. The reason for this, presumably, is so the psychologist and psychometrist can observe your child’s behaviour while waiting and their interaction – or lack thereof. Try to engage your child in the most natural way possible. A psychometrist will enter and ask some general questions about behaviours and make general observations. She’ll then move you both into another room to do a further test. This process is repeated a second time when your child is further up in the waitlist. The assessments are to determine eligibility, but again, parent experience has varied on this point (eligibility criteria are not clearly understood by many parents as seems children on different ends of the spectrum may or may not be accepted). If your child has been accepted into the DSO program, the senior therapist will arrange a time to come to your home to make her own observations. This is very intrusive, however the AIPEO model has an emphasis on parents being knowledgeable on IBI and supporting the program at home. While all this may sound over-whelming, it does ensure your child will receive supports when they are ready to enter the school system with AIPEO’s School Support Program. Even if your child doesn’t get screened in, she will still have supports to transition to school. If you received a private diagnosis, you will need to contact AIPEO yourself to start the referral process, or check with your psychologist or pediatrician’s office to see if this can been done on your family’s behalf.

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Advocating with Autism Intervention Program of Eastern Ontario (AIPEO): If your child is diagnosed Classic Autism or Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS), he or she may be eligible for the Autism Intervention Program of Eastern Ontario (AIPEO)’s waiting list. This list does not include Asperger’s diagnosed children. The developmental pediatrician from OCTC will send a referral in automatically, if he doesn’t think he needs to, you can do the referral yourself. The waitlist is intended for IBI or an Applied Behaviour Analysis (ABA) classroom. The list is also further broken down into Direct Service Option (DSO) or Direct Funding Option (DFO). While the ministry insists the list is the same, this is not the experience of parents who’ve been on the waiting list, and there are many reports of the DFO list taking much longer than DSO even though theoretically the money comes from the same pot. Overall, the wait-list takes an average of 2 years. There have been parent reports of children not progressing in the list because there was no communication and therefore an implied lack of interest. The best way to stay on the list is to call AIPEO’s offices to request where in the list your child is at regular intervals (every 6 months minimum) at (613)745-5963. As you progress in the list (around spot 30), be sure to remove any blocks you may have on your home phone for unknown numbers and to monitor your call display. Again, parents have reported getting phone calls from blocked numbers and disregarding the call, only to find out after they’ve been bumped down in the list. Other parents have answered the call to find it was AIPEO calling with the block enabled. As to whether the fact your child is severe autism or on the other end of the spectrum and whether that will affect them receiving funding or programming, there really is no way to tell. Some children with PDD-NOS enter programming, as do some with severe classic autism. There are many parent theories behind this, but the best advice is to arrange an assessment by calling the office above. AIPEO also offers free parent training on ABA/IBI techniques. There has been recent, 2010, changes to this. Up to now, this parent training was MANDATORY for your child to be able to enter programming. It’s unclear if parents are still required to attend training. The training was, until this year, had many formats including Picture Card Communication classes, toileting, make & takes ect. If you disagree with AIPEO’s ruling, there is a brief period and a consultation meeting where you can discuss your concerns. While this isn’t always a positive meeting, there are instances where it can be better explained why your child doesn’t meet the criteria (since the nature of the reports can be impersonal) or why they feel your child won’t benefit from the programming.

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Why is the wait so long for everything? There are varying answers to this, from children that previously had aged out from AIPEO’s list being allowed back in to the explanation that autism is on the rise, affecting 1 in 70 boys. According to special needs advocate Lindsay Moir, the Ottawa region (specifically Kanata) claims the second highest incidence rate, or cluster, of autism in North America. Different organizations will give different reasons, but the results are unfortunately the same.

What are we to do in the meantime? Consider finding ways to fund private IBI or ABA therapy, again, the only therapy proven to be effective. Whether it’s training yourself to do it, or applying for grants like President’s Choice Children’s Charity. While IBI can be life-changing for some children, even its practitioners will tell you it won’t work for all children. There will be many individuals encouraging diets, supplements, hormones, and other alternative therapies. Most of these have little to no scientific basis. Consider the background of anyone urging you towards a specific treatment option, especially if they mention it works for “all” our children or “cures” ASD’s. There are many free courses and support groups available to learn about parenting a child with this disorder. OCTC offers a free support group, however, if you are interested in attending a block of sessions you need to call your families case worker (because their case load is so enormous they can’t individually call families to inform them). There are also a few organizations where you can go for playgroups with other ASD families – South Nepean Autism Centre (SNAC), Children at Risk (CAR), Thursday’s Child Nursery School (TCNS). OCTC also has their own playgroup and operates respite weekends. Some are free and some charge a fee. Autism Ontario often funds family outings to encourage ASD families to enjoy a recreational experience in the security of other ASD families, parents pay a reduced rate. Prior to diagnosis, you may have been involved with QuickStart. This program was founded by a grandmother who experienced these wait-times with her grandchild. Speech & OT and behaviour consultants are available to give general advice and ideas for home use. This service is also free, and is in partnership with OCTC.

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Getting Services – all these services are free for parents. Children’s Integrated Support Services (CISS); aka Andrew Fleck Child Care Services If your child is already attending a nursery school more than 2-3 days a week, Children’s Integrated Support Services (CISS) can offer speech, occupational therapy, and developmental professionals visit and make recommendations to the staff about helping your child start conversations with other children, or how the help them learn to pedal a bike (if there’s gross motor problems). CISS can also provide an Educational Assistant (EA). If your child is not attending nursery school, but needs to integrate before school, CISS can help place the child in a childcare spot and then offer the services mentioned above through the Centralized Waiting List. For children with PDD-NOS diagnosis, it is possible to use ACSD funding to supplement the cost of nursery school (the thought being the child benefits from learning from neuro-typical peers).

Getting Services From OCTC – Speech and Occupational Therapy After waiting to be assessed for speech and language as well as occupational therapy, your child will be booked for a block of 10 sessions over a period of time. It may be once a week or once every two weeks. Many parents have reported they have not heard back from the speech or occupational therapist after this block of time. This seems to be because the onus is on parents to keep the therapy going. It will be up to you to again advocate for your child and phone or email the therapist to set up a new block. You are also entitled to an Integrated Service Plan meeting (ISP) with the OCTC staff including your case worker, speech therapist and occupational therapist. Plan the meeting to include any other support people, even privately hired, to attend this meeting – this can ensure your child has access to therapies for a longer period of time. It is important to keep speech and occupational therapy going for as long as needed because of the transition to school. When your child enters Junior Kindergarten, he will lose access to occupational therapy. Likewise, when he reaches age 5, he’ll lose speech therapy. The school board, specifically Community Care Access Centre (CCAC), takes over the case. You’ll need a report (including a discharge report) that is under one year old to speed up access to CCAC.

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AIPEO and OCTC: they are both CHEO, but not really… There is a glitch when it comes to dealing with both AIPEO and OCTC at the same time that this author and a few other parents have encountered. By this point, parents are usually only still dealing with the speech therapist, having aged-out or maxed-out occupational therapy. OCTC speech and language pathologists are expected to consult with AIPEO if the parents request it. However, certain professionals have used this transition period, and the lack of documentation or a service plan, to drop clients. The problem arises, especially for children in the transition school, when CCAC needs referrals and especially discharge reports. These children end up in a bureaucratic black hole and are unable to continue to the next phase of treatment. In this author’s experience with this void, the wait was a year and almost a dozen professionals talking to one SLP to obtain the report, which itself took over 2 months to complete. The pressure on both organizations to keep lists moving is tremendous and there are also instances of competitive in-fighting between both that can also cause problems.

Community Care Access Centre (CCAC) CCAC takes over speech and occupational therapy after discharge from OCTC, and may do their own assessment with your child. The occupational therapy is a consultative model, whereas the speech therapy is a treatment approach. If your child has significant gross or fine motor problems it will be up to you to be the therapist, or to hire a private firm. As long as your child has an identified need the the Identification Placement and Review Committee (IPRC) and in his Individualized Education Plan (IEP), he will be able to access CCAC services through the school. If for some reason you have been dumped by your OCTC therapists, you can ask the school to make the referral to CCAC for you. CCAC does have a waiting list of about six months, so it’s best to ask for the referral from your therapists (both) as soon as possible. CCAC mostly needs these to prove they are the sole provider of services.

Service Coordination des Services (SCS) SCS provides respite funding and support services for families of children with autism or other developmental disorders. In the past, several middle and single-income families have been denied respite funding, while upper and dual-income families received funding. This is because SCS doles out its funding on a first come, first served basis according to need; relying on families to accurately report their needs. SCS can also help families apply for private funding and fill out tax forms and any other assistance of that nature.

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Getting Funding – from the province One of the biggest barriers for parents looking to obtain funding is in the poor management of the Government of Ontario’s website, which is plagued by broken links and a defective site search. The following are the types of funding available through the Ministry for Community and Social Services (MCSS). The Minister in charge of these programs is Madeline Meilleur, an Ottawa politician who has also claimed “the wait-times for autism are practically zero” (2007 locally held election debate). Her department, however, does have some useful programs: Special Services At Home (SSAH): Pros: 

can be used for respite, summer camps, house cleaning.

Cons:    

wait-list is extensive. Maximum $2,400 which can NOT be used for private ABA/IBI or other therapies. Money is paid up front by the parent, receipts and supporting documentation needed to make any claim. Yearly report documenting family situation and needs required.

Assistance for Children with Severe Disabilities (ACSD): Pros: 

  

Can be used for almost everything including extra clothing and laundry costs, transportation for special programs (not the programs; except in some cases), respite. No wait list No waiting for refunds, money can be direct deposited. Allowances made for families with multiple children with special needs

Cons:    

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Also requires yearly report Requires documentation of expenses If grant is used to supplement diapers. The province asks parents to first get money from Easter Seals. For low to middle income families (under $60K/yr). Higher income families may still qualify, however, for a reduced rate.

Getting More Funding (non-government): President’s Choice Children’s Charity (PCCC) – PCCC will pay for IBI therapies as well as a whole range of other special needs treatments and equipment. The paperwork required, however, can be a bit of a chore. Most of the IBI providers in Ottawa will help you fill out the forms if requested. However, a response comes usually in a few weeks. PCCC will give one-time maximum $10,000 donation per household. The service or equipment provider is paid directly by PCCC, so there is no logging of how money is spent. Easter Seals Incontinence Grant – designed for disabled children who are still not toileted by age 3. This includes autism. A maximum of $400 paid in $200 installments twice a year. Parents are required to keep receipts showing a need, and to only claim diapers used during the day. (The Jennifer Ashleigh Charity used to fund IBI/ABA and RDI therapies but no longer does as of October 2010).

Private Services: Because the wait for public IBI services is extensive, there are numerous centre-based IBI programs as well as home-based. In centre-based, the costs can be higher (about $150/3 hr session) because of over-head costs, and there are hidden costs like transportation. Home-based services can cost less because you’re only paying for the senior therapist and junior therapist, however, may require a dedicated room in your home and you may wish to be present. Centre-based has the added advantage of being able to bring in their own speech and occupational therapists to support their programming included with the cost of treatment. There is no organization that is “best”, some have a pure ABA/IBI format and use the Assessment of Basic Learning and Language Skills (ABLLS) while others may draw from other therapies like Verbal Behaviour, Relationship Developmental Intervention (RDI), Natural Environment Teaching (NET) ect. The best advice is to sit during the session, look at how data is collected and how your child responds to the therapist and the program. Some of these are non-profit ventures, while others are for profit, with the profits reinvested in the programs. Some of the private IBI centres also offer home programs. To find private services, consult the “Compiled Directory” which is published on the “Autism Support Ottawa” Yahoo!Group, or shared on ottawaautismconnection.com. However, not every resource is listed in the directory (Connecting Pieces offers services to families outside and inside the City of Ottawa, but does not have a listing).

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Non-Treatment Services: Respite, Workshops, and Social Opportunities Just as there are many private services offering a full spectrum of services, there are many organizations providing non-treatment services. These organizations strive to provide for the areas of most demand; however, there is a gap of services for very young children and for young adults. Most groups start around age 6 and others are finished for those over 16. None of the government funding will pay for workshops or parent education – even though it’s parents that will be living with the outcomes of the diagnosis. However, plenty of free courses are available through provincial programs like AIPEO and OCTC and through nongovernment or joint ventures. As mentioned before, Autism Ontario and Children at Risk do many social opportunities. There is a very noticeable deficit in our area when it comes to integration with neuro-typical peers. Organizations have a difficult time gathering typically-developing children to “teach” ASD children.

Final Analysis Ultimately the onus is on parents to advocate for their children. This shouldn’t be viewed as a battle, but as a war. However, the enemy is not the person you’re talking to, it’s the system. Remember that the person you’re dealing with is trying to work within the system to free up these resources for your family. The best way to ensure they are acting in your child’s best interest is to keep a cordial and professional attitude. This is amazingly difficult to accomplish because of the emotions involved, but employing a certain amount of professional detachment often helps. One of the strengths in the Ottawa area is that so many parents and grandparents gather their own resources and strive to make things easier for the next family. Because IBI is the only proven, effective therapy for autism it is imperative to obtain an early diagnosis and start a treatment plan as soon as possible.

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