Building a Bridge: The when and how of life planning

Building a Bridge The when and how of life planning

Life is filled with changes, particularly for families who have children with disabilities and special needs. Upon receiving their child’s diagnosis, parents enter a world of specialists, therapies and services that can feel both empowering and overwhelming.

One of the biggest life changes faced by families is the transition from the school setting to the world of adulthood. The “when and how” about the future are challenging to answer for anyone, and even more so for individuals with intellectual and developmental disabilities (I/DD).

Resources do exist to help families navigate this tricky process. Schools begin to offer information and options during IEP meetings when students are 12–14 years old. Because each child is unique, information is often general and generic, leaving families uncertain about their next step forward.

So those families wait. They wait for things to get clearer, they wait for more details or they wait for a sign from above.

The When (don’t delay)

Families often wait until a deadline forces a decision, then they make that decision in crisis mode. This is definitely not the way to ensure long-term happiness and success.

The most common example of this deadlineforced decision is whether a student will be on the diploma track or certificate track. Recent legislation (CA Education Code 51255.31) has added the option for a graduation diploma with continuing education services until the age of 22 for those students entering ninth grade on or after the 2022–23 school year.

SDRC has a specific transition department to help families navigate the transition from services that come primarily from the school system to those funded by the regional center. Even with resources and support, it can be very challenging for parents to think about the future when

each day is filled with appointments, therapies, homework and daily life. It’s even more challenging when a disability impacts communication, processing, social behavior or safety.

Impacted communication means a child may not be able to express their wishes clearly. Impacted processing may mean a child doesn’t understand the context of the question, or even realize that a question exists. Making friends, creating community, engaging in reciprocal relationships can be difficult, if not impossible, for children who don’t recognize, understand or attach any importance to social cues. Safety concerns related to a diagnosis or selfregulation issues can overshadow all other concerns. This creates a minefield around the seemingly simple question, “What does your child want for their future?”

Regardless of the challenges a family faces, the future is coming. School will end. Adulthood will arrive. So, don’t put off planning ahead.

San Diego Regional Center (SDRC) Executive Director Mark Klaus encourages families to start planning for the bridge to adulthood when children are 13–14 years old.

Home of Guiding Hands (HGH) offers a life planning workshop series designed to help families define their optimal future and navigate the steps to move toward it. The workshop series is vendored by all regional centers and can be added to an Individual Program Plan (IPP) for funding. Each of the five workshops in the series focuses on an aspect of life planning, building on ideas and concepts. Topics address challenges, skills, abilities, community and connection, living options and legal issues. Exercises and discussions allow families to learn from each other, share ideas and resources, and sometimes change perspectives.

Programs like Life Planning help families define non-negotiables and a desired future for their child. Knowing the right questions to ask, having clear criteria to evaluate options, and feeling prepared in the face of change truly alleviates the worry that prevents parents from taking action. Even without participating in the program, parents can take steps on their own to

help evaluate options and opportunities. Each action step is like laying a board onto a truss to build a bridge between the school environment and the broader world of adult services. Here’s what parents can do:

• Communicate and observe. Talk to children about what they like and what they want. Watch them in different environments to observe patterns of comfort and success.

• Attend resource events. Most schools host resource fairs and invite adult providers to share information with families. Ask questions, get information and follow up for details. Providers are happy to discuss specific needs.

• Think ahead. Create flow charts and pro/con lists to project possible outcomes for big decisions. This helps clarify what your child wants in the future.

• Access resources. Reach out to other parents and professionals. Be prepared with specific questions to address areas of concern or uncertainty.

• Experiment. Try new activities. Assign new responsibilities. Use baby steps to establish a foundation for future skills that lead toward an optimal life.

• Project possibilities. Think about all possible applications of your child’s interests and abilities. What can start as a seemingly inappropriate fixation may actually contain the seeds for success in a future job or career.

For more information about HGH’s Life Planning workshop series, visit www.lifeplanninghelp.org or www.guidinghands.org v

Wendy Smith has volunteered and worked in the field of disabilities for almost 40 years. She is also the mother of an adult son with multiple disabilities. She has facilitated Life Planning workshops for 18 years in San Diego County.