Planning Out the Future for Your Child with Special Needs

I remember the day I found out my son was on the autism spectrum. I went to a support group and they told me: ”Take time to mourn the loss of the child you will never have. Grieve for all the plans you made. And then, focus on loving and planning for the child you do have waiting for you at home.’”

Billy was three years old at the time.

Today, he’s 22, and though it stung, that advice remains some of the best I’ve ever received. Yet, even once I started to re-evaluate what I’d pictured for my son’s future-rethinking what I’d assumed about where he would go to school, what kind of job he might have, where he would live-I still needed to plan for this new reality.

After Billy’s diagnosis, my life became a blur of paperwork. I was swimming in referrals, medication trials, insurance denials-not to mention the EEGs, IEPs, and IQ tests. The acronyms alone made my head spin. And it didn’t get easier as he got older-the closer Billy came to aging out of the school system, the more work I realized I needed to do. All the planning and learning was practically a full-time job.

So, I made it my actual job. I started working in the disability community and learned about accessing services and setting up person-centered plans for the future.

Today, Billy takes college classes, works part-time, and recently got his driver’s license. He is on the path to a paid full-time job and independent living. And me? I’m here to tell other parents of kids with special needs: You don’t have to do this alone. It doesn’t have to be so hard.

Here’s my ‘cheat sheet’ to get you started:

Have a young child who was just diagnosed?

  • Sign up on the PUNS (Prioritization for Urgency of Need for Services) list and get a case manager (https://www.illinois.gov/dd/Pages/SignUp.aspx).
  • Find a support group. Check out national web sites like www.autismspeaks.org, www.upsfordowns.org, or www.cerebralpalsy.org if you need local contacts.
  • Don’t have an Individualized Education Plan yet? Go to www.Bridges4Kids.org and pick some goals that are important to your child. Set up an IEP meeting at your child’s school.
  • Consult an attorney about starting a Special Needs Trust for when you are gone.
  • Use your network. The Jewish community is full of organizations that can help. Check out Jewish Child and Family Services (http://jcfs.org/) and Keshet (https://keshet.org/) to see if any of their programs might be right for you.

Planning for middle school and high school?

  • Think about what your child loves to do and how you can apply that to job skills for the future. What pre-employment skills do you need to teach now for your child to be successful later? I suggest a Person-Centered Plan (www.lookbackplanforward.com), a facilitated brainstorming session where you set goals and plan the steps to get there. (Full disclosure: I train the Illinois facilitators. We do one for my son every three years.)
  • Look for social and recreational opportunities for your child through organizations like Best Buddies (www.bestbuddiesillinois.org), Special Olympics (www.soill.org), synagogue youth groups, or the Friendship Circle (http://www.fcil.org/).
  • Have a school transition planning meeting at age 14 1/2.
  • Learn about Employment First (www.dol.gov/odep/topicsyouthsoftskills/softskillspdf).
  • Don’t forget to renew your PUNS status every year.
  • Update your Special Needs Trust.

Have a child in high school and don’t know what’s next?

  • Schedule another Person-Centered Planning meeting. Discuss job coaching, networking opportunities, and potential housing options as your child (and you) age. Related: Check out CJE SeniorLife’s LINKAGES program (http://cje.net/linkages).
  • Continue to train toward independence with chores at home and outings into the community for things like shopping, banking, and taking public transit.
  • There’s a long list of things to do when your child turns 18: Have them sign the Delegation of Rights to Make Educational Decisions form. Get an ID card. Register to vote. Make guardianship choices and Power of Attorney plans. Apply for SSI (Supplemental Security Income), Medicaid, and reduced transit fares. Become a LIGAS Class Member (https://www.dhs.state.il.us, type LIGAS).
  • Update your Special Needs Trust.

By TERI STEINBERG
Also published in JUF News

Teri Steinberg is a frequent lecturer, facilitator, consultant, and trainer on disability issues, and has been interviewed many times for TV, radio, and print. She has worked in the disability community for over a decade through grants from the Illinois Council of Developmental Disabilities, the Department of Human Services and the Illinois State Board of Education. Steinberg consults transition programs, schools, and families on person-centered planning in keeping with the principles of self-determination and living an inclusive life in the community. She is also the founder of Plan A Better Future (planabetterfuture.com). For more information or personalized consulting, email TeriSteinberg@PlanABetterFuture.com.

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

Fundraiser for Autism Research

When Highland Park mom Teri Steinberg learned that her son, Billy, was diagnosed with autism at age two, her life was changed forever.

“Take the time to mourn the loss of the son you will never have,” Steinberg recalls being told by the leader of her support group. “He told me, ‘Grieve for all the plans you made for him that probably won’t pan out. And then, you can focus on loving and planning for the son you do have waiting for you at home.’”

She’s done well more than that! Sixteen years later, Steinberg has transformed from a devastated mother into Billy’s biggest supporter and advocate, philanthropic powerhouse raising funds for autism research and counselor to other parents.

Steinberg now sits on the other side of the support group table — offering advice, guidance, and strategic planning assistance for other families caring for individuals with disabilities — she has also been a key mover and shaker in organizing Autism Speaks upcoming fundraiser, An Evening with the Stars, which will hold its sixth annual event on Sunday, February 24, 2013 at the InterContinental O’Hare Hotel in Rosemont.

Read more here: Make It Better