Tag Archives: children with disabilities

Future Planning for People with Disabilities

There’s a little known gem that’s been available in the Chicago area for the last five years.

Those in the know have been picking Teri Steinberg’s brain for her expertise in the disability community. She has been a free resource for those that were lucky enough to hear about her grant from the Illinois Council on Developmental Disabilities. She will come to your home and guide you through the alphabet soup of agencies and tools that you need to know about if you have a child with a disability.

She will come do a PATH Planning Alternative Tomorrows with Hope. This tool is where she will facilitate forming a Circle of Support and resources around the person with a disability. She will guide you through brainstorming sessions designed to form a Board of Directors, filled with family, friends, neighbors and people in the community.

Teri can connect you to PAS Pre Admission Screening Agencies, PUNS Prioritization of Needs List, HCBW Home and Community based Waiver info, therapists, CILA Community Integrated Living Arrangements, and guiding you through Discovery for Employment options to create or carve out jobs and even create housing opportunities with varying levels of support and funding. Whew, that is an alphabet soup!! Fear not, and don’t be overwhelmed by these terms that may be unfamiliar to you.

Teri will do all of this for free as long as her grant lasts. The grant was renewed at least for another year, so families who are interested should call to get on her schedule. She can help guide you toward a person-centered life in the community. Her territory is Chicago and all surrounding suburbs. Teri is able to connect you with all the areas you need to work on when developing a plan for the future. You can call her at 773-793-4541. Let her help you bring it all together into a workable plan for your child’s future.

As Teri says, “a life changed for the better is practice-based evidence.”

Also published on Highland Park Patch
Written by Amy Greenebaum

Life is Either By Design or Default

As the school year ends, lets look ahead to what we hope the upcoming year will look like. It’s never to soon to plan. You will be your child’s case manager for the rest of your life. Start getting used to that idea now. There will never be anyone who will care more than you. Take on that role today. Get used to it while your child still has the entitlements at school, to assist you in helping your child succeed.

You can work on say, four goals each time. Perhaps one related to socialization, one academic, one behavioral, one focused on how they will handle themselves in the community, or one related to daily living skills or early career exploration. It depends how old your child is currently. But, don’t put these things off until the end of high school and think they will automatically learn, for example, how to do their own banking. You need to keep in mind teaching Concentration, Pace, Persistence, Flexibility, not just math, science, history, etc.

I always send a parent letter that includes what goals I think we might work on, about two weeks before the IEP meeting. It is always filled with hope and excitement over how my son is growing, maturing, and how I hope they will support him in the upcoming year. My parent letter always includes thanking his IEP team for really caring about what’s best for my son. It is always respectful.

Bring coffee & doughnuts to your IEP meeting and work together as a team. Bring your child too. Before the IEP meeting, consider having your child prepare a presentation. It might be a short video of them doing what they love, eating, playing, drawing, whatever. It may be pictures cut out of a magazine and glued to paper. But it adds a human slant, not just numbers and measurements, to the meeting. If your child is able, they can read, sign, or use a pre-typed communication device, to deliver a message to the team, introducing themselves. People on your team are more respectful in front of him/her when stating accomplishments and mastered skills or the goals and not just the deficits or areas needing improvement. Concentrate on what she/he can do, if supported well. Your team can decide if the skill is emerging and your child is progressing or if you need to continue the goal.

Talk about what the DREAM YEAR would look like, and then backwards plan it. If the goal is to get to here, by the end of the school year, then what do we have to do in six months, or three months, or next week? How will you know if your child has had a good year, if you have no idea what that would look like?

The focus should always be: “What will life look like when he/she is a 30 year old adult, living and working independently, in the community with whatever support that might look like at that time?” “What do we need to pre-teach now to be able to have that independence when they are an adult?” Think of them as grownups. Going about the typical life of self-care, home, health, money, banking, employment and career interests. We need to grow and nurture these skills over the next few years. Let’s design a year filled with attainable goals. It should be a stretch, but not stressful. Let’s continue to move towards the future, taking purposeful, baby steps forward, toward where we want to go.

Also published on Autism Speaks