A Model for Joint Parent Advocacy

By Carole Slipowitz

In recent years, parents of children with autism spectrum disorders (ASDs) in several towns have organized into advocacy groups, in order to persuade our local school systems to pay more attention to our children’s needs. This article describes the strategies and successes of the Network of Newton Autism Parents (NoNAP), of which I am an active member. NoNAP has existed for over two years. As a group, we parent over 70 children on the autism spectrum, and our membership is growing all the time!

In creating NoNAP, we have come to recognize the importance of respect and confidentiality. We are a diverse group. Some of us have children who usually “pass” as neurotypical, while some of us have no choice but to be “out” as parents of a child with special needs, since our children visibly “stim” or have little speech. Some of us want more pull-out services in a quiet, distraction-free space; some of us have children who would be terribly embarrassed if they had to leave their classrooms for services. At times subgroups of parents whose kids have similar needs work together on projects to address those needs; as the result of efforts by NoNAP parents, next year one school will have an integrated, co-taught kindergarten class including a cluster of ASD children.

Our group is open only to parents or guardians of children with ASD who either live in Newton (including those in out of district placements), or attend a Newton public school. Before joining, members are asked to sign a statement agreeing to keep confidential the names of other group members and their children.

NoNAP is an independent organization of parents, separate from our school district’s Special Education PAC (Parent Advisory Council). School districts are mandated by law to establish PACs. PACs include parents of children with all kinds of special needs. Their meetings are held in school buildings, and are open to school administrators. Most NoNAP members also belong to the Newton PAC. However, as parents of children on the autism spectrum (ranging from Asperger’s to classical autism), we have found that it’s useful to have private meeting times and spaces. To enhance communication, we have also established our own e-mail group through www.yahoogroups.com.

Newton is an inclusion-oriented school system in which it is typical to have only one ASD child per classroom, so we parents are unlikely to meet each other through classroom activities. Yet parents of children with ASDs are usually hungry to share stories, and to understand what services our school districts offer. Many of us have learned the hard way that if we don’t know to ask for a service for our child (or for a change in quantity or quality), it may not happen. For example: Because Newton is an especially big district, a staff member at one of its 22 schools doesn’t always know when a new program is being used at a different school. Questions we might answer for each other at NoNAP meetings include:

  • “Is your child in a social pragmatics group?”
  • “Who in the district is skilled in doing functional behavioral assessments?”
  • “How did you get your child’s aide to understand what s/he needs on the playground?”
  • “Who really ‘gets’ our kids, and can give input that will be listened to by team members?”

Our group has sponsored speakers Stephen Shore of AANE, and Dr. Lauren Weeks (speaking on Relationship Development Intervention). We have helped Newton secure funding from the Massachusetts Department of Education for an Autism Specialist. We also participated in the interviewing and hiring of Scott McLeod and Dot Lucci of MGH YouthCare as consultants. They are now surveying parents, staff members, and administrators about Newton’s current educational practices, services, and programs for children on the autism spectrum, including issues of school staff/parent communication.

One of NoNAP’s first acts was to approach the Superintendent of Schools when Newton was advertising for a new Special Education Director. We communicated our particular concerns and suggested interview questions. Since the arrival of the new SPED Director, Margie Daniels, our group has maintained strong communication with her. Each month, we organize a larger meeting on a particular topic, such as social pragmatics programming, human resources/hiring issues, or services for children of particular ages. The larger meeting is typically attended by Ms. Daniels, the school staff members who are most involved with the topic, Newton’s Autism Specialist, and one or both of the YouthCare consultants.

Over time, groups like ours can come to be perceived as allies to special education departments. We can write letters in support of a school district’s grant application, publicly testify as to why proposed cuts in special education will be detrimental, and even co-write grant applications with district staff. Many towns have non-profit school or education foundations that take private donations from residents to fund programs that are not in the public school budget. Last year NoNAP members collaborated with Newton staff and successfully appealed to the Newton Schools Foundation for $5,000 for staff training on how to do effective social facilitation.

NoNAP has had a positive impact on many families and schools. By meeting, parents often learn that what we thought were our own unique problems are experienced by many others—and we can solve them together. When we approach the school system as a group, we increase the chances that educators will address our concerns. Sometimes parents fear that “making waves” will cause them to be disliked, and even decrease a school’s good will towards their children. My own experience in Newton is that, as parents continue not just to highlight problems, but to present ideas, concrete assistance and solutions, school administrators are responding positively.

Carole Slipowitz is a psychologist in private practice in Newton and Wellesley. She works with college students and adults, including parents of children on the autism spectrum. For more information on the NoNAP model, or information about NSNAP (a similar group in Needham), please e-mail Stephanie at aane.associate@rcn.com.

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