The tween and middle-school years can be an exciting time for children with intellectual disabilities and their parents, as the focus shifts toa vision for the child's future.
When her daughter Sydney was in early elementary school, Jennifer Vacca of Grafton wanted Sydney, who has Down syndrome, to be engaged in the same academics as her neuro-typical peers. This goal worked out well, especially in kindergarten, where all students were learning foundation academics and social skills. Sydney is now 12 years old, and as the students grew older and the academics became more challenging, Vacca chose to change the approach to her daughter's education.
“Last spring, one of Sydney's teachers was lamenting how Sydney wasn't getting the main idea of the story. I finally said, ‘She doesn't need to know the main idea of the story. She needs to know how to read streets signs, recipes, and labels,'” Vacca said.
Vacca, who is a teacher, explained that in the present approach to education, the emphasis is on meeting standards to become college or career ready. But she recognized that her focus for her daughter was about preparing for adulthood: “It was me that said we need to start focusing on more functional things, such as counting money. I want her to be able to read, but I want the focus to be on things she needs and more about making sure she can move forward when she is an adult.”
Vacca then sought reading goals for Sydney that included learning to read labels, informational signs, and being able to read a map. Vacca hopes that in adulthood Sydney will have some sort of supported-occupation. This hope, combined with Sydney's interests, helps to formulate what education advocates refer to as her “vision.”
Leslie Leslie is project director for the Federation for Children with Special Needs' MassPAC, which provides support to Parent Advisory Councils around the state. She explained that as children approach the transition-planning phase of their education, something exciting happens. Transition planning is a legally-mandated component of the Individualized Education Plan process that is supposed to happen in IEP team meetings, which include a child's parents, teachers, specialists and school administrators,and goes into effect when a child turns 14.
“There is a real shift in the whole mindset,” Leslie said. “Whereas before this time we are looking at the child and saying, ‘These are the challenges and deficits,' we now shift to saying, ‘Where do you want to go? What is your vision and how can we help you get there?'”
This process is very empowering for young people, noted Leslie, who explained that all planning for the next few years centers around supporting that child's vision.
Susan Shapiro, an educational consultant, special education advocate, and speech-language pathologist, emphasized the necessity that a child's team look at all aspects of a child's needs when creating the IEP, including speech and communication.
“From the time a child with a disability enters school, the team should be thinking about transition and fostering independence,” she said. “Speech-language pathologists, educational audiologists, assistive technology specialists, etc., should be involved from the beginning. An IEP is a fluid document that can and should be adjusted as the needs of a child change. A comprehensive transition assessment will include data regarding a student's communication skills and needs as they move toward college, employment, or community.”
According to Shapiro, teams should begin by asking these guiding questions:
• What will the student learn?
• Where will the student work?
• Where will the student live?
• What is the assessment plan?
Parents should request an Independent Educational Evaluation Transition Assessment if the school's is absent, incomplete, or inadequate, Shapiro said.
“The transition planning form is a mandated form, and Department of Education has an advisory around it because the student is invited to the team meeting. It is really all about them. We want to clarify the student's vision. What are the disability-related challenges? What are action items? When we write the IEP, wehave had a robust discussion around the student's vision,” MassPAC's Leslie said.
“The end result should be an individualized IEP/transition plan using comprehensive assessment data. Goals must be congruent with any plans for transition and be measurable. The implementation of the goals must be monitored,” Shapiro added.
That IEP can then guide school services and also assist parents in setting goals and making plans for activities, social interactions, and home and community-based learning.
Partnership between family and school is best when parents understand the goals and what the team is trying to achieve, and then provide additional opportunities at home and in the community with internships, volunteer opportunities — or even asking friends to help create opportunities, Leslie said.
Through school and community-based activities, a student learns to narrow the vision to focus on what works for him or her.
“Sometimes we may find that a child has what we consider to be a totally unrealistic vision, like a rock star or astronaut. We celebrate that vision and write it down,” Leslie said. Then the focus moves to working with the child to help him or her identify what it is about the vision concept that is appealing. This may reveal a love of music, which could create opportunities to work at a record store or a shop that sells musical instruments. Perhaps a child who wants to be an astronaut is very interested in space and could volunteer at a local museum or planetarium.
Leslie recommends parents drive the goals of strong academics as long as possible because you never know when an idea “is going to click.” Those academics can often be structured around the child's interests and vision, she said.
Vacca is pleased with the opportunities her daughter's school is creating for Sydney to work on functional skills. For example, one day she assisted the school cafeteria staff. Another day she delivered mail throughout the school. Recently her class visited an orchard to pick apples. The next day they made applesauce. “Sydney thinks apples are for eating. Now she knows you can cook with apples,” Vacca said.
Leslie recommends parents begin learning about the transition process early. There are so many amazing opportunities for children as they head to adulthood, it is a little overwhelming. But, it is best if parents learn what they can while their child is in school, before they become worried about other issues, like housing, she said.
Transition planning workshops are held throughout the state by various groups, including school district Special Education Parent Advisory Councils and agencies like Seven Hills and The Arc of Opportunity. These workshops help parents in creating a post-secondary vision for their child and provide guidance on how to sit down with young people and help them embrace what they want. The goal is to let the student lead, when possible.
“If it's done right, it is about a positive future,” Leslie said.