AG Bell Public Policy and Advocacy

By Krissy Rule and Shannon Mueller

1. What is the AG Bell Model Legislation?

Rule:  The AG Bell Model Legislation was drafted by members of the AG Bell organization in response to many Language Equality & Acquisition for Deaf Kids (LEAD-K) bills popping up in U.S. states. The driving force behind these bills is to end language deprivation for deaf and hard of hearing children and to ensure they start kindergarten with a strong language foundation. (http://www.lead-k.org/about/)

The AG Bell model bill focuses on supporting parents’ right to choose their child’s communication mode and ensuring that every child who is deaf or hard of hearing has the same opportunity as any child to achieve his or her educational potential. The AG Bell model legislation takes an unbiased approach to support all communication modes, to specifically include rights of parents, and to create a balanced advisory committee where individuals using all communication modes are equitably represented.  

Mueller:  In the Commonwealth of Virginia, a group of parents, professionals and service providers together with legislators recognized a need for legislation in our state to improve outcomes of children who are deaf or hard of hearing. We recognized that every child with hearing loss should have the same opportunity as any child in Virginia to achieve his or her educational growth potential and to become a full participatory member of society. Together, building on the legislation framework provided by AG Bell, we wrote Virginia House Bill 676. 

Our bill would require all state agencies involved in the education of children who are deaf or hard of hearing to improve child outcomes by ensuring children and families receive appropriate follow up, develop a safety net that would follow children throughout critical language development and academic progression, and improve the services available to children with hearing loss who use all languages and communication options.

2. What should parents know about it?

Rule:  If passed in New York, parents should know that this legislation would provide measurable goals to ensure their children are ready for school.  It would empower parents to help their children reach their goals by ensuring that families have access to services that match their communication mode and that children have seamless and continuous service delivery from birth through age 5. The bill calls for periodic assessments using valid and reliable measures to ensure progress towards language acquisition and literacy.

Mueller: When parents are told that their child is deaf, there are no easy choices.  Parents must make big decisions. I say “big” because these are decisions that will directly impact their child’s future. That is why all of our state agencies need to provide consistent, comprehensive and unbiased information, as well as services and resources to families to ensure everything is done to achieve the best possible outcomes for the children.

Every family is different and their individual strengths, desired outcomes and choices must be respected.  For these reasons, it is vital that families are given unbiased information regarding hearing loss, language and methods of communication. When this is done, families can make decisions and choices for their children that work for their family.

HB 676 would ensure that those who work with children with hearing loss have the resources needed to educate families about hearing loss in a comprehensive and unbiased manner. This legislation includes the Early Hearing Detection and Intervention Program (EHDI), Infant- Toddler Connection, and Virginia Department of Education (VA DOE).

Our bill protects the rights of children and their families and requires highly qualified professionals within the guidelines of IDEA.

3. What issues are at the forefront of the model legislation?

Rule: At the forefront of the AG Bell model legislation is that no child should be deprived of learning language, whether spoken or signed. As a parent of a child who was deprived of language until the age of three due to late identification, I know all too well the daily struggles that language-delayed children face. The first years of a child’s life are the most critical in language development. My state used parts of the AG Bell model legislation to develop our own legislation. If passed in my state as written, the model legislation would provide an opportunity for all deaf and hard of hearing children to reach their full potential, no matter in which town, county or state they live.

Mueller: Most importantly, this bill protects the rights of children and families by guaranteeing parents will be provided with all the information they need about language and communication choices (these are different!) and about the services and programs a child will need to successfully learn language and become literate by third grade. Additionally, the legislation ensures language (English, ASL, Spanish, other) AND methods for communicating languages are provided to parents so they can choose what is the best fit for their child and family. And then the state must provide the services and supports they will need to reach their goal.

AG Bell outlined three specific concerns to its members as legislation has emerged across several states:

1. An absence of legislative language about providing education and support that matches a child’s mode of communication. Children and families are unique in their own culture, language use, needs, abilities and desired outcomes. For these and other reasons, it is important that the range of options be available to children who are deaf or hard of hearing. Still, it should be noted that, today, with the majority of children born deaf or hard of hearing receiving newborn hearing screening and early diagnosis, coupled with quality hearing technology and earlier entrance into early intervention services, the ability of a child to develop adequate age-level listening and spoken language skills through his or her hearing is more attainable than ever.
2. No option for parent choice, which refers to the critical role parents or guardians have when making decisions about communication and language for their children. Parents and guardians, who typically spend more time and know their children better than anyone, have the role and responsibility of being the decision makers for their children. As the primary support for their children and as models of language and life, parents’ and guardians’ roles in decision-making need to be included in legislation.
3. An imbalance in the recommended composition of advisory committee members in most states (i.e., representatives who use ASL outnumbered representatives who do not know or use ASL) and some concern about the extent to which the committee might be involved in the education of individual children.

4. Where can I find more information about the AG Bell Model Legislation?

See https://www.agbell.org/ for more information.

Authors:

Krissy Rule is the mother of a ten-year-old bilaterally implanted son and an eleven-year-old hearing daughter. Despite a failed new born hearing screen and multiple follow up appointments, including years in early intervention, Krissy’s son’s hearing loss was not identified until he began preschool at age three. He was aided at that time, and then received cochlear implants at the age of seven.

In the early years soon after identification, a total communication approach was utilized. It became clear fairly quickly that he wanted to speak. The family struggled to find listening and spoken language resources in their area, and eventually found an oral deaf preschool an hour from their home, so commuted daily for over a year. It turned out to be the best decision for her son and has made a world of difference in his life. He was successfully mainstreamed in kindergarten, and is now a happy, social, well-adjusted 4^th grader. Krissy is an advocate for listening and spoken language and early intervention in her area, and a resource for families starting out on this journey.

Shannon Mueller is the mother of a six-year-old son who was born profoundly deaf. “Just like many parents who receive this news, I thought the word ‘deaf’ meant that my son would only communicate using American Sign Language (ASL).” For six months, no one told us otherwise. We enrolled in Early Intervention, but our Early Intervention Specialist knew nothing about hearing loss.

Our family started ASL classes as soon as my son was identified. An interpreter came to our house once a week to teach us ASL through early intervention. As a family, we became increasingly frustrated and anxious because learning ASL was difficult for us, including my husband, our two-year-old hearing daughter, my mother-in-law and myself. My husband and I are devoted and dedicated parents, but we were failing to learn this new language and we were overwhelmed. I shared my concerns with my father who suggested I look into cochlear implants. I did not know what cochlear implants were then and, even now, I’m shocked that no one ever mentioned cochlear implants to us during the really important first six months of my son’s life, one of the most powerful and critical periods for language development.

On my own, I made an appointment at the University of Virginia to learn more. There, I learned that my family and my son had choices. I was also told that my son was a candidate for cochlear implants and at 11 months, he was bilaterally implanted. What a relief and thrill it was to see him finally start to develop some listening and spoken language skills! He now thrives in his mainstream classroom and is reading and writing. And he talks to anyone who will listen!

Yes, my son is deaf, and he always will be. However, cochlear implants are a tool he uses to give him the ability to hear and talk. I and, so many other parents, are committed to making sure families understand that they have choices and that they have the right and responsibility to be in “the driver’s seat” from the very beginning of their journey. Ultimately, parents need to have a voice in any legislation or other policy decisions that are made that impact children who are deaf or hard of hearing.  ~