by Janis Jaffe-White

Janis Jaffe-White presented this paper at the CHA support and information meeting on February 16, 1999.  Janis provides outreach to other families through her work on various committees and projects, and she is an active advocate for special education students.

Almost 4 years ago, at age 3, our son, Zachary, was diagnosed with Pervasive Developmental Disorder (PDD).  Since then, we have been involved in committees and research studies, but mainly most of our time has been spent searching for appropriate programs, services and funding assistance on his behalf. We are proud of ourselves for what we have been able to achieve so far, and sharing our knowledge with others has been extremely important.  Support gives hope to people.  Hope can give the impetus to make meaningful things happen.

Zachary currently attends a regular Grade 1, class supported by a special needs employee of the Toronto District School Board (TDSB).  His two sisters attend the same school.  Our school team for Zachary consists of the principal, classroom teacher, special needs support, special education teacher, psychologist, occupational therapist resource teacher and special education advisor.  Outside of school, we see a Speech- Language Pathologist and we have access to a behavioural consultant.

We have been able to get and keep support services in school for Zachary by advocating strongly, and by having a smooth transition from the labyrinth of preschool services to the public school system.  Without having such a smooth transition, we would likely have found ourselves lost and unfocused about how to identify and meet his needs academically and socially.

This is why early intervention is so important:  the sooner that one becomes familiar with what is available in the community, the more likely one is to become a successful advocate.  Early networking can be most helpful in understanding and using the systems in place to provide support for children like Zachary.

When  parents or other caregivers call about a child with PDD, hyperlexia, or some other kind of disability, they ask questions about educational rights, about SEAC, SLP's, OT's, IPRC's, IEP's, ISA and many other anacronyms. They ask about the importance of labelling their child, about schools and programmes and about differences between public, separate and private schools. Many ask more personal questions, like: How is Zachary doing in school? Does he have friends at school? Does he get teased? Is he safe? How do his sisters react to their brother at school? How did you get what you have in place for him?

While I don't have all the answers, I do readily talk about how well Zachary has done in the public school system over the past three years. It is this kind of assurance that others need to hear in order to feel inspired to work so hard on behalf of their own child. Then, as a group, we can affect the kinds of changes that are needed at the decision-making levels to ensure that our children have the best educational opportunities.

Be informed and up-to-date!
Being aware of the system for servicing school-age children with special needs (and being aware of changes to the system) is the first step in developing an approach to use when dealing with decision-makers involved in the child's education.  (Information for the system in Ontario can be obtained through the CHA office.)Successful advocates know their rights as parent/caregiver and the educational rights of the child. They have a copy of the provincial curriculum documents from the ministry and they are aware of the expectations for their child's grade level.  They access the ministry's web site for information and they are aware of the position of the ministry and their school board on issues specific to their child.  Some attend their school's PSA/school council meetings to share information and post notices on bulletin boards, and others attend school board meetings, such as Ward Council meetings and city-wide meetings to raise concerns, make themselves visible, personalize issues, get business cards, drop names, set up appointments, network, learn about grassroots parent organizations and get on mailing lists.

Once parents have developed several ministry or school board contacts, they often call more than one person at a time to get information -- they don't waste time waiting long for calls to be returned.  They will ask ministry or board staff to fax information to the child's school  (or by board mail if they have a good relationship with the principal or school secretary), and when calling the ministry or board, they say that they are "calling from (name of school)" but do not give the false impression that they are school staff.

Meetings and more meetings!
The successful advocate brings lots of organized paperwork to meetings. They show that they have developed an inclusive file on the child and education issues. They often bring a picture of the child to meetings involving bureaucrats who do not know the child.  They will present a holistic view of the child, describing strengths and areas of need. An emotional parent advocate will often bring along another person (spouse, support worker) who can balance out the presentation. They will never leave a meeting without satisfactory decisions having been made -- they will not be influenced by the clock. If necessary, meetings will go longer than scheduled.

Taking advantage of supports outside of school...
Some community supports may be more helpful than others. Parents find it helpful to speak to other parents about what worked for their family. If the child is entering the elementary school from a preschool setting, it is often helpful for the preschool staff to meet with the school staff to share information and strategies before school begins. If possible, the school staff could visit the child at the preschool.  Specialists who work with the child outside of school (e.g.. developmental paediatrician, speech-language pathologist) could be invited to school meetings and the IPRC's. Having that person there, one who is familiar with the child's needs  and all the technical language around special needs, can make the parent feel more comfortable and more in control.

Document, document!
The successful advocate records all conversations including names, dates and times, develops contact lists of the names, phone numbers, e-mail addresses, etc., takes notes at all meetings, gives the impression of being prepared, and asks for copies of meeting minutes.  Most parents find it useful to develop a profile of the child for different professionals.

Using the system...
Successful advocates monitor the types and levels of services offered, get involved in tracking surveys, and keep in contact with their SEAC representative and school trustee.  They access information using the Freedom of Information Protection of Privacy Act.  They attend meetings to meet bureaucrats and families, share information with their PSA/
Student Council. Some become their school's representative on board-wide committees.  They keep informed about changes to services offered by the Ministry of Health and the Ministry of Community and Social Services, and they stress to Ministries how important it is for Education, Health and Social Services to be working together  on providing programmes and services.  They are aware of new community- based services and Individualized Funding projects. And they are aware of how changes to other funding sources can impact on what is available through the education system, eg. Special Services at Home funding, Assistive Devices Program, Heal Care plans, Revenue Canada taxation policies.

Persistance!
The successful advocate is "in their face" but never rude. They won't wait long for calls to be returned -- they will call back many times. They are friendly yet firm when dealing with influential people.  Regarding political issues, some advocates give great thought as to whom to copy on letters to keep others informed, and copies of letters can be sent to education critics in the governments and  to newspapers if deemed necessary!

Educate!
Information is shared with other parents and teachers, yet it is often best not to inundate others with information unless that's what they want.  Parents often ensure that the needs of sisters and brothers are considered in the planning for a child with special needs.  And it has been found to be most important to share information about changes at school and at home with EVERYONE involved with the child.

Local Support Groups...
Many groups already exist locally to help families learn about services and the process of advocating.  A school-based group can be started with a bit of effort and support from the principal, and the group's existence can be advertised in the school's newsletter.  Issues such as meeting location, frequency, and topics are defined by the group.  Meeting monthly is likely often enough for most people.  Meeting away from the school (maybe in a coffee shop) usually works best for families, especially if parents work.  And the existence of the support group can be mentioned when one attends board meetings. It is important that everyone be aware that there are people organizing themselves to share information, experiences, and to improve awareness of disability issues in the community.

Whatever approach parents take along this journey, there will inevitably be disappointments -- and successes. I know that it will always be our family that has the ultimate responsibility and desire to guide  Zachary toward an independent and rewarding life. I try to neither create stress nor dwell on what I cannot control.

I just don't give up!