The Power of Parents

By Vicki Robinson

Good morning. My name is Vicki Robinson, and I am presenting as a representative of VOICE For Hearing Impaired Children. I am the mother of a 24 year old son who has had a moderate-to-severe bilateral sensory-neural hearing loss since birth.

While many VOICE members are professionals, audiologists, teachers of hearing impaired, speech pathologists, and auditory-verbal therapists- and while VOICE For Hearing Impaired Children has professional staff in Toronto – Executive Director, Director of Therapy Services, Education and Heath Consultant, and an Executive Assistant – VOICE is an organization of parents and families. Thus it is appropriate that I speak to you today, as a parent and about the power of parents.

VOICE is celebrating its 40^th anniversary this year. We began as a grassroots parent support organization and today VOICE provides emotional and technical assistance to families of hearing impaired children, supporting parental choice of how their children communicate. VOICE maintains approximately 1000 members in 17 chapters across Canada.

A clear goal and mission, dedication and perseverance are some of the characteristics of those who get the job done. The parents who were and are the driving force behind VOICE For Hearing Impaired Children are such individuals. VOICE has had a central mission to ‘ensure that all hearing impaired children have the right to listen and speak.’

In the past 40 years, parents and professional have worked diligently and collaboratively to achieve these goals. Through their visionary efforts they have educated government officials in the heath and education departments and advocated for needed services. They remained focused and continued their efforts in the face of resistance to change and were able to influence the development of early intervention programs, itinerant services in local school boards and were able to ensure continued funding needed to support cochlear implant services.

In addition, VOICE now provides Auditory-Verbal therapy intervention services throughout the province of Ontario, trains professionals to work with children with hearing losses who are learning to listen and speak and provides support programs for families of deaf and hard of hearing children. Canada boasts a large concentration of auditory-verbal therapists and VOICE attributes this to the unified efforts of parents.

In the year 2000, VOICE developed a strategic plan which solidified the organization’s goals:

1. To ensure that all parents of newly diagnosed deaf children in Ontario are aware of the option of the auditory-verbal approach.
2. To expand access to auditory-verbal therapy in Ontario.
3. To improve the integration of deaf children into the Ontario educational system.

I have now referred several times to Auditory-Verbal Therapy – or AVT for short. And you are probably wondering what this is. Because AVT is a cornerstone of VOICE; because it is what we advocate as a first option for all deaf and hard of hearing children; because we know it works; and because it is what we do best, I will now spend a little time explaining it to you!

So, what is an Auditory-Verbal approach?

This approach subscribes to the belief that children who are deaf or hard of hearing can learn to listen and speak. Even minimal residual hearing, when amplified and trained is sufficient for children to develop oral language.

There are a number of principles underlying the Auditory-Verbal approach

1. EARLY DETECTION – Babies can be tested at birth for the presence of a hearing loss. Often parents suspect a loss months before the loss is actually confirmed.
2. EARLY FITTING OF HEARING AIDS OR COCHLEAR IMPLANTS – With advances in hearing aid and cochlear implant technology, babies can be fitted with ear leave aids as early as required. Cochlear implants are now available to babies with profound losses as young as 1 year of age.
3. MAXIMIZING LISTENING SKILLS – With proper amplification, children who are deaf or hard of hearing learn language through the normal channel – which is HEARING.
4. IMMEDIATE SPEECH AND LANGUAGE INTERVENTION – It is important to maximize the critical period of language acquisition in the early years. No baby is too young to start AVT.
5. A PARENT CAREGIVER CENTERED APPROACH – Young children learn language throughout the day, in every situation. Parents and caregivers are the natural language teachers. Auditory-Verbal therapy harnesses and enhances the already existing parents to develop the skills they need to help the child learn to listen and speak.
6. AUDITORY VERBAL IS A DIAGNOSTIC APPROACH – Children’s progress in learning to listen is carefully assessed and charted to ensure that this is the appropriate method for each child to develop spoken communication. AVT is not for every child but the majority have successfully learned to use their hearing and verbal skills to communicate with their families, friends and the community at large.
7. SUPPORTS THE CONCEPT OF MAINSTREAMING AND INTEGRATION of children with hearing impairment into their neighbourhood schools. We expect our children to grow up doing the same activities as their hearing peers, and then to take their rightful place in the society at large. But I will talk more of that at the end of the presentation.
8. A TEAM APPROACH – This ensures the best delivery of services with physicians being involved in early detection, audiologists in on-going audiological management, therapists in auditory-verbal intervention and always with full family participation.

Does Auditory-Verbal Therapy Work? Recent research shows that it is a successful approach. In 1993, an outcome survey interviewed graduates of an AV therapy program to determine if its goal was being met – the goal being: that these children will grow up in regular learning and living environments enabling them to become independent, participating and contributing citizens in the mainstream of society. The respondent sample of 157 adults with a severe to profound loss, felt that the goal was achieved.

In 1999, VOICE participated in a study funded by the Social Science and Humanities Research Council of Canada and the Children’s Hospital of Eastern Ontario Research Institute on The Facilitation of the Integration of Children and Youth with hearing loss.

The study demonstrates that auditory-verbal therapy develops listening and spoken language skills which aids in the successful integration of children with hearing losses into regular classrooms.

The study showed that an intensive AV therapy program in the preschool years is one of the factors identified as contributing to successful school and community integration.

The research also concluded that early identification of hearing loss, with prompt audiological evaluation and management, is essential to successful integration.

And finally on the subject of Auditory-Verbal Therapy, I must stress that this approach is internationally practiced and recognized. At a VOICE conference, here in Ottawa in 1987, Auditory Verbal International was born, springing from an AG Bell parent and professional group. AVI is the professional regulating body and there are now a total of 253 certified Auditory-Verbal Therapists worldwide. We are very proud of these 253, 60 are in Canada and 38 are in Ontario.

Certification exams are held annually-the next will be held in Toronto in the summer of 2005.

So now, back to VOICE and its parents. In the past 40 years, parents and professionals in Ontario have worked persistently to get one message out to the community at large:

…Children with all degrees of hearing loss can learn to listen and speak.

The result of these consistent efforts is that several major programs have been developed in Ontario to provide Auditory-Verbal intervention to families and their children who are deaf or hard of hearing. VOICE families have been at the forefront of the development of several of these programs.

In 1962, The Hospital for Sick Children launched an early intervention auditory verbal training program for children with hearing losses.

Through this program, hundreds of children learned to listen and speak under the tutelage of Louise Crawford who trained with Doreen Pollack, one of the pioneers of the AV approach.

Concurrently, a group of parents, who passionately believed that their profoundly deaf children could learn to listen and speak and attend their local schools with the neighbourhood children, began to mobilize their efforts to advocate for increased services for their children.

In mid 60’s these parents broke away from the existing parent group-Metro Toronto Association for the Hearing Handicapped children which laid the foundation for the VOICE organization which became an incorporated entity in 1975.

In 1979, VOICE established the Auditory-Verbal Therapy Program at North York General Hospital. The program continued under the auspices of VOICE until the Learning to Listen Foundation took over responsibility for the program in 1994. This program, directed by Warren Estabrooks, currently offers AV services to more than 50 families.

In the mid 1970’s The Children’s Hospital for Eastern Ontario opened its doors, housing an Auditory-Verbal therapy program as part of its Audiology Department. Judy Simser, an AV Therapist and parent of a child with a profound loss, was a member of the initial staff hired to provide AV intervention to preschoolers with hearing losses. This program is funded through the hospital’s global budget and continues to offer auditory-verbal therapy to infants and preschoolers as well as cochlear implant recipients.

In 1985 another AV therapy program was started at Credit Valley Hospital where Hope Turcotte provided AV intervention to families in Mississauga and other communities west of Toronto. In spite of the excellence of the program and the proven need for it, hospital budget cuts led to its cancellation in 1995, only 10 years after it began. VOICE parents protested vigorously – but to no avail.

With the closing of the Credit Valley program, Toronto and Ottawa were the only centres in Ontario offering AV therapy services. Families from all over the province traveled to them for the programs for their children, but this was not a satisfactory arrangement. VOICE had a vision that these services be available close to the family’s home, throughout Ontario cities.

In 1999, VOICE’s itinerant program was established and a VOICE therapist traveled monthly to Ontario VOICE chapters, providing AV therapy services.

From that beginning, the VOICE AV therapy program has grown to its current capacity which provides intervention by 12 Auditory-Verbal Therapists to 73 families in 7 Ontario communities.

One of the major factors in ensuring excellent AV services is the availability of trained certified Auditory-Verbal therapists. After the closure of the McGill graduate program, which trained many of the AV professional in Ontario, no other University has filled the void. In its place, creative opportunities for training have developed to fill this gap.

In Ontario, VOICE established its AV intern training program in 1994 which has ensured that every chapter has a certified therapist to provide local services.

Currently 9 therapists have completed their training…

…And 6 have obtained their certification.

VOICE also worked closely with York University to ensure that AV courses were entrenched in the curriculum of the Teachers of the Deaf program.

As well as in providing Continuing Education courses for teachers of the deaf and hard of hearing who were interested in developing their AV skills. More than 60 professionals have attended these additional qualification courses and at least 15 of them are now certified AV therapists teaching in the Ontario School Board.

More recently, the Ministry of Heath, as a result of its newly developed Infant Hearing Screening Program has provided funding to train 16 Speech Pathologists in Auditory-Verbal Development techniques.

In Ontario, families and professionals developed a strong coalition over the years which has laid the foundation for the development of highly regarded AV intervention and training programs.

Ontario is the province with such rich programs and we serve as a model for other provinces as well as for other countries.

With the launch last year of the universal infant hearing program in Ontario, VOICE has ensured that all parents of newly diagnosed deaf children in Ontario will be aware of the option of auditory-verbal therapy. And that all parents will have access to auditory-verbal therapy.

Ontario leads the way in Canada…

…in its recognition of the importance of early identification of hearing loss

…and access to effective audiological supports, and

…for the first time in Ontario, provincially funded auditory-verbal therapy

The parents of every child in Ontario who is identified at birth with a hearing loss will now learn of the auditory-verbal therapy option and their child will have access to therapy within their community for two years post-diagnosis

Statistical results, at the completion of the first year of the Infant Hearing Program, have shown that the majority of families with babies identified with a hearing loss are choosing the auditory verbal approach in teaching their child to communicate.

Of the 120 infants whose families are in an early intervention program:

80 chose the AV approach
7 chose ASL
9 chose a Dual approach
22 communication approach is not identified

Let us turn now to Education, where integration was not always the practice.

In the early 60’s, a group of Ontario parents had a vision that their children who were profoundly deaf could learn to listen and speak and go to school in their local communities.

The provincial government believed children who were termed educationally deaf would be better served by attending a residential school for the deaf in Milton.

Clearly-parents had a job to do - educating the government officials on the needs of their deaf children who were learning to listen and speak.

In an era when deaf children had historically been segregated, these visionary families held firmly to their determination to have their deaf or hard of hearing children educated alongside their hearing peers.

They were instrumental in helping to establish itinerant teacher of the deaf services in Toronto schools, which has grown to be province-wide today.

In the 70’s, as technological support evolved, VOICE lobbied for access to FM systems in the schools. Today FM systems for deaf and hard of hearing students are assured under the current funding formula.

VOICE continues to speak out at school boards with representation by as many as 40 volunteer Special Education Advisory Committee (SEAC) representatives and alternates.

For years, parents have kept a watchful eye on School board budgets and program changes, and have never hesitated to make presentations to their local trustees. I might add, that when things were going well, we presented the good news to the Board as well!

Time and again, parents responded to position papers put out to the community by the Ministry of Education to test the winds of change - change in both regular school policy as well as policy concerning the education of the deaf. Almost always, change did not take the needs of our children into account. We had to be sure that their voice was heard.

VOICE has often been represented on working group and task forces dealing with deaf education. Today it is an active force dealing with deaf education. Today it is an active participant on the Minister’s Advisory Council on Special Education and the Provincial Association Advisory Council to the Special Education Advisory Council.

Right from the beginning, it has been important for VOICE parents to lobby elected officials for services for our children - and to educate Members of the Legislature and School Trustees- to let them know that deaf children can learn to listen and speak. It has been important to be in touch with local MPP’s, write them, introduce them to our children, invites them to VOICE meetings.

But always, our focus swings back to our families and our children. VOICE provides one-to-one support among parents, family to family. In many chapters, we pair "experienced" parents with new ones so that those with a child who has a recently diagnosed hearing loss have some one to turn to for advice.

VOICE provides the opportunities for families to meet socially and for deaf or hard of hearing children to meet others like themselves.

VOICE chapters regularly put on workshops for parents on a wide range of subjects such as parenting, education, and technical devices.

VOICE sends its members local and national newsletters- keeping parents in touch with one another and keeping them informed.

What does all this mean in the context of this conference?

When we are talking about mental heath, and more importantly, mental wellness – the best way I can demonstrate what the efforts of the VOICE parents has meant is to tell you about some of our kids. Kids that are no longer kids, but who now are participating members of society at large.

One young lady has just completed the Educational Assistant Special Needs Support program at Niagara College. Another has a degree in computer science and has been working in the high tech industry for the past 10 years – she now owns her own home. A third has graduated as a Surgical Technician. One of our Ottawa VOICE kids obtained a Bachelor of Science in Professional and Technical Communication and then an MBA. She works as a Product Market Specialist for MCI’s Information Systems and Solutions. One of her friends graduated with a Batchelor of Science in Social Work and has worked as a residential counselor in a group home.

A young man who grew up as a Toronto VOICE kid is now a corporate lawyer with a large Toronto firm. Another obtained both an MBA and law degree and works for the provincial government. My son graduated from Centennial College with a diploma in Radio and Television Broadcasting. He works as a camera man for CityTV in Toronto.

It has not been easy for any of these young people – or for their parents. And there are still countless challenges ahead – both for each and every child with a hearing loss, for their parents, and organizations such as VOICE. But I am confident that these challenges will be met.

The programs we have today exist because parents refused to be defeated by lack of resources, lack of knowledge and lack of programs.

It was the sheer grit and determination of parents fighting for another option, a listening and speaking option, for their children that gave rise to VOICE and all we have been able to accomplish on behalf of kids with hearing disabilities everywhere.

Without fail, when the need arises, our parents and therapists are there to show the way, their energy and their commitment fueling our drive to ensure that all children with severe hearing losses can get the help needed to allow them to take their rightful place in society.

I would be happy to try to answer questions for the time remaining. 

Thank You.