BBB AUTISM SUPPORT NETWORK/AUTISM SOCIETY OF ONTARIO YORK REGION CHAPTER

A BEGINNER'S GUIDE TO AUTISM IN YORK REGION

RESOURCES FOR PARENTS OF PRESCHOOL CHILDREN

NEWLY DIAGNOSED WITH AN

*Autism Spectrum Disorder or "ASD" includes Autism, Asperger's Syndrome, Rett Syndrome,  Childhood Disintegrative Disorder  and PDD-NOS. There are co-existing disorders that can appear with ASD such as, developmental delay, seizure disorders, Bi Polar Disorder, CP, Down's Syndrome, Apraxia, Obsessive Compulsive Disorder and more. We have provided limited information on these. To get more, please look at BBB Autism Support Network Website or contact the Autism Society of York Region at asoyork@axxent.ca.

1. Contact Early Intervention Services – after going through intake, also ask to be set up with an Occupational Therapist and Speech-Language Pathologist.  1-888-703-KIDS (5437)

2. Contact Ministry of Community and Social Services (800-263-2014) – ask for applications for Special Services at Home (SSAH) and Assistance for Children with Severe Disabilities (ACSD) <Ministry of Community and Social Services (1-877-669-6658) –for applications for Special Services at Home (SSAH) and Assistance for Children with Severe Disabilities (ACSD)>. SSAH provides funding for in-home parent relief. For more information, click on the link in the "How to Fill Out Forms" section, or the one provided here (point 2).

3. If child is incontinent and over 3, contact Easter Seals to get reimbursed for diapers (416) 421-8377

4. If child is non-verbal, contact Assistive Devices to get a discounted copy of Boardmaker (communication software using PECS) (800) 268-6021 (Toll-free in Ontario only). In Toronto, call (416) 327-8804 . Boardmaker software available through Bridges/Betacom.

5. Contact Autism Society of Ontario (York Region Chapter) for information and outline of upcoming courses (905) 780-1590 or e-mail: asoyork@axxent.ca.

6. If behaviors are an issue, contact York Central Hospital's Behavior Management at (905) 773-2362 

7. Contact Kerry’s Place (Community Outreach 905-713-6808). They provide consultation to families regarding strategies for behaviour, communication, social skills etc.  Appointments available within 2 - 4 weeks at various locations throughout region. Also provide parent respite and a large lending library available to the public.

The agencies you call will set up appointments to meet with you.  You will generally go through an "intake" process, which consists of many questions about your child and family.  After intake is complete, it is time to start asking questions for yourself. Questions you need answers to are:

1.       What services, interventions and/or therapies are offered by your agency? (i.e. Occupational Therapy, case management, communication, transition to school, etc)

2.       How many hours per week do these services require and how much of this is one-on-one time with the child?

3.       Describe a typical day or session.

4.       What experience do the teachers and/or therapists have in working with children with ASD?

5.       What experience does the person who supervises the program have? How closely does the program supervisor work with the therapists, teachers and parents?

6.       What kinds of ongoing training do your full- and part-time staffs participate in?

7.       Are parents involved with planning as part of the intervention team?

8.       Do you provide a parent training program?

9.       How much and what kinds of involvement are expected of the parents and family members?

10.   Are parents welcome to participate in or observe therapy and or group sessions?

11.   What techniques do you use to manage difficult behaviors?

12.   Do you ever use physical aversives or any physically intrusive procedures? If yes, please describe them.

13.   Please describe your program for communication and language development. Do you use a picture communication system, sign language other kinds of communication systems, or all of these? How do you determine which is best for my child?

14.   Are there opportunities for integration with typical and/or higher functioning children?

15.   How do you evaluate a child’s progress and how often?

16.   How are services delivered? (Do they come to your home or do you go to their location?)

17.   Is there a wait list? How long? What services are offered while on the wait list?

18.   Are costs involved? If so, how much? How are you billed? Is there an income dependent sliding scale for prices?

19.   Does your agency offer help to find other resources? (i.e. finding ABA/IBI therapists, private schools, etc.)

20.   What does your agency offer to help with integrating my child into the community?  Help with learning self help skills? If not, can you recommend a program/agency?

21.   What other (parent, sibling) courses does your agency offer?

Look in the mirror!

The best advice anyone can give you right now is to become your child's case worker.  After all, there is no one on earth who knows your child better! Unfortunately, our area's services are quite fragmented, and you probably won't find an agency who will tell you who to call and/or how to proceed (unless it's within their own area of expertise).  Let's face it, wait lists are long and to avoid frustration, begin educating yourself now.  Learn how to be an advocate for your child. 

Join newsgroups and online support clubs like BBB Autism's Support Network and talk to other parents.  Learn about therapies and learn strategies on coping.  Other parents are a great wealth of knowledge and resources.

Join your local chapter of the Autism Society of Ontario.  Information about York Region's Chapter can be obtained by emailing asoyork@axxent.ca.

One of the worst things that can happen is to sink in denial for an extended period of time.  Denial will not only hurt yourself, your other children and your marriage, but will not help your ASD child.  It is okay to have a couple of dates with denial, but for heaven's sake, never marry it!

HELPFUL LINKS

YORK REGION AND GTA INFORMATION:

(please note: some of these agencies may charge for services)

PRIVATELY FUNDED

These books and many others can be ordered from Parentbooks in Toronto.

Please note: Inclusion of these books does not mean that BBB Autism or the Autism Society of Ontario (York Region Chapter) necessarily endorses them. It is imperative that you do extensive research on any therapy you are considering for your child.

Most of these books and many others can be ordered from Parentbooks in Toronto.

How Do I Fill Out Forms for Funding?

A great place to start is Project Rainbows Suggested Guidelines, which provides some guidelines for filling out SSAH and ACSD form.  Ask your Early Interventionist for help with this project.  You may think you don't need the government's financial help, but please consider and take everything that is offered to you!

Project Rainbow Suggests the Following Guidelines for Completing Annual Applications for

The Special Services At Home Program (revised 11/99): 

What is Special Services At Home (SSAH) & Assistance For Children With Severe Disabilities (ACSD)?

Both are funding programs available to families caring for children and/or adults with developmental and/or physical disabilities (N.B. Individuals over the age of 18 with significant physical disabilities, capable of ‘directing own care’ may qualify for funds through the Ministry of Health’s Attendant Care program). Funds are provided by the provincial office of the Ministry of Community & Social Services and are administered regionally. Funds are intended to pay for extraordinary costs associated with a disability.  

Assistance For Children With Severe Disabilities ACSD (formerly Handicapped Children’s Benefits-HCB)

The ACSD program is income-tested and requires a separate application requesting information about expenses, etc. and may assist with additional costs for those who qualify. Additional information and applications can be obtained by contacting your local office for the Ministry of Community & Social Services. 

  1.    level of functional loss

2.    family supports

3.    community supports in place, i.e. school, day program, Homecare, etc 

 Please ensure you have completed all necessary information, and have signed the back of the form. For additional assistance, Project Rainbow staff would be happy to help you (416-503-0088x17) during regular business hours.

 
SPECIAL SERVICES AT HOME APPLICATION

(Completion Guidelines—01/00) 

The following guidelines have been prepared by Project Rainbow staff to assist families when completing the revised (MCSS) Special Services At Home Application form (Nov/99). The new application form will be used across the province and does not require any ‘Supplementary Information’ forms. Old application forms including supplementary information forms should not be used. 

SECTION 1: REQUESTS FOR SERVICE 

Although adequate space is not provided in the new application form, it is becoming increasingly important for families to accurately reflect a child’s needs and illustrate how the request for funds will positively affect the individuals’ (applicant) development and the family’s (including siblings) quality of life. To do this, you may need to attach an additional sheet of paper. Consider using other professional’s (i.e. Teacher; Speech Pathologist; OT/PT reports, etc.) recommendations to substantiate requests.  

Because camp opportunities are both ‘Personal Development & Growth’ and ‘Family Relief & Support’, families may want to send a progress report (optional for respite funds) to substantiate a request for service, particularly if the request is new or an increase over previous years. 

 The numbers and figures presented (below) are only to demonstrate how the equation is transferred to the SSAH Application format. Your current family situation may warrant more or less hours, etc. It is very important that your request be based on real needs vs. what the ‘average’ family may receive. Every family situation is unique and (family or applicant’s) needs are subject to change. Your request must include all hours that you anticipate for the entire year including any recreational programs. 

REQUESTS FOR SERVICE-- SAMPLES ONLY

N.B. Families will want to provide sufficient details as to how the funds will be spent. Consider attaching a separate sheet of paper as the space on the application is inadequate.  

A. 8 hours per week for 52 weeks = 416 hours

@ $10.00/hr

TOTAL = $4160.00 

B. 6 hours per week for 52 weeks = 312 hours

@ $10.00/hr = $3120.00 &

20 days @ $50.00 (i.e. Project Rainbow Summer Camps—see below) = $1000.00

TOTAL = $4120.00 

3. 4 hours per week for 42 weeks = 168 hours

@ $10.00/hr = $1680.00 &

24 hours per week for 10 weeks (i.e. summer) = 240 hours

@ $10.00/hr = $2400.00

TOTAL = $4080.00 

4. 4 hours per week for 39 weeks = 156 hours

@ $10.00/hr = $1560.00

20 hours per week (i.e. Christmas, March Break & Summer) for 13 weeks = 260 hours

@ $10.00/hr = $2600.00

TOTAL = $4160.00 

Sample Per Diems for Project Rainbow Participating Programs (1999/2000)

Note: Per diems (i.e. daily cost of support counselor to work with your child at camp) vary according to the camp program. Sample requests have been provided below. You may request day camp support, residential camp support, or both. Funding approval may vary according to the individual ministry office. 

When students have 1:1 support in the classroom, parents may want to include this, particularly when it supports (B) Personal Development & Support and (C) Supervision (safety, etc.). 

Remember to use sections provided for additional information. 

Remember to give details including:

 Remember to use section provided for additional information. 

SECTION 4:  SUPPORT NETWORKS 

SECTION 5: PAID SERVICES & SUPPORTS 

 SECTION 6: SIGNATURES 

ALSO AVAILABLE (and free) TO HELP YOU ON YOUR JOURNEY:

A General Beginner's Guide to Autism : Features links and recommended reading along with a glossary of terms and a guide to a few of the most used therapies for your young ASD child.

BBB Autism/Autism Society of Ontario York Region Chapter E-Newsl: Twice monthly newsletters packed with stories, strategies, articles, links and recommended reading from professionals and parents alike. Also contains announcements of online specialty chats and workshops/courses/presentations in the York area.

BBB Autism Online Support Network: Want to  meet other parents online? You can discuss strategies, triumphs and bumps in the road with our fantastic members. BBB Autism offers many unique features all free of charge. Please check our  website which includes over 1200 links to information about ASD and many contributions by parents. We also provide parent matching/mentoring and specialty chats featuring well-known guests in the ASD world answering questions on topics that parents want to hear about.

To order or for more information, email bbbautism@deaknet.com.

Very Low in Cost:

Support from the Autism Society of Ontario (York Region Chapter). For information on how to meet other families and much more, contact asoyork@axxent.ca. Small yearly fee to join allows you to attend our workshops at an even lower cost.

Parent Empowerment Courses: A fantastic series of workshops, presentations and courses developed by parents of autistic kids, topics came out of a reader poll and resulted in subjects parents know parents want to hear about. Practical and very cost effective, please contact asoyork@axxent.ca for more information.

87: July 23, 2002

A notice to our readers...

The Autism Society of Ontario (York Region Chapter) and the BBB Autism Support (ASOYRC and BBB)  Network are not physicians.

This guide references books, service providers, agencies and  websites that may  be of interest to the reader.  The ASOYRC and BBB  make no presentation or warranty with respect to the accuracy or completeness of the information contained on any of these web sites or in the books, and specifically disclaim any liability for any information contained on, or omissions from, these books or websites.  Reference to these websites or books herein shall not be construed to be an endorsement of these websites or books or of the information contained thereon, by the ASOYRC and BBB.

We do not necessarily represent the views of the Autism Society of Ontario or any of the other agencies listed here. This document is based on parent feedback and experiences. Information is not intended to be taken as medical advice.

BBB Autism Support Network is not responsible for information found on the websites we are linked to or the books we list.