What’s Your Plan? Part 1: Getting Started
Editor’s Introduction: We’ve all heard the phrase, “Failing to plan is planning to fail”. Variations of this quote have been attributed to Benjamin Franklin, Winston Churchill and Alan Lakein, as well as others. With the 2018 upon us, we often start to think of planning, setting goals and accomplishing new things. To start off our Parenting with Altitude blogs this year, we’ve asked several parents to tell us about their planning efforts in respect to financial planning and resources for their family. We’ll be publishing this series of blogs over the next several weeks with the hope that you’ll find some ideas and inspiration for planning for your family, specifically for your son or daughter with a disability or special health care need.
What’s Your Plan? Part 1: Getting Started
Planning begins with our values. Values are from our parents, traditions, cultures, education, friends and life experiences. As children, we don’t realize we are learning values, but we are. In addition to my family’s “no whining” policy, my parents demonstrated the value of discipline to achieve goals.
My folks were deceased when my son, Eli, was born, but their values guided me to set and achieve goals for myself as his Mom and the life outcomes I wanted for him. At age 3, Eli was on the path to 36 diagnoses, was spectacularly self-injurious and fitfully slept 4 hours daily. Physicians used the word “terminal”. My goal was to keep him alive while experiencing the most quality life possible.
That goal drove the 1992 Autism treatment and Early Intervention statutes, the CES And CWA Waivers, the HIMAT law, and more than a dozen other statutes and bills I worked on as a single working parent caring for a “worst case scenario” child. I didn’t whine. I set and, as circumstances changed, reset goals and somehow mustered the discipline to work towards achievement. That was the behavior my parents expected of me.
When Eli was 3, an estate planning attorney, Stanton Rosenbaum, also a parent, encouraged me to plan. He asked who would care for Eli if I became incapacitated. My answer was, “no one”, meaning, my goal of keeping Eli alive and experiencing quality of life depended solely on me.
Overwhelmed, constantly exhausted and anxious, I bought insurance (Life, Long-Term Care, Disability). Stanton set up a Supplemental Needs Trust to hold assets and protect Eli’s access to benefits, and suggested I write a Letter of Intent. The Letter of Intent is dually purposed. It is not just instructions for others. It is how we live in the here and now to achieve our desired goals.
At age 3, Eli’s geneticist said, “I don’t think Eli is going to die.” I held onto that “life preserver” as I described my vision for Eli’s future. The Letter of Intent had goals for fulfilling lives for both of us. Eli’s letter influenced his IEP and therapy goals. I asked, “What is needed now to attain independent living skills at 21?” He was only 3, but I recognized it might take 18 years of tiny steps to achieve some independence activities.
I updated Eli’s Letter of Intent when he was 18. I was so surprised when I re-read his age 3 letter and realized we had already achieved many of our future outcomes.
Now that he is an adult, I often update Eli’s Letter of Intent. He, like everyone, changes. It is now more “in my face” that others may need to step up to make decisions in his best interests. The letter describes how best to support Eli and what he expects.
Eli expects people to be promise-keepers, respect him and be nice to him. He has his own work goals and is disciplined towards achievement. He sews for the Autism Community Store and volunteers at the Arthritis Foundation and Talking Books Library. Eli wants to be with patient, compassionate people with realistic expectations.
I have met thousands of parents over nearly 30 years. Every family is unique with their own terrors and triumphs, behaviors and beliefs, visions and values. P2P parents are motivated to do their best for their families. Planning is an opportunity to put our motivations into actions. As Scott Page states in his book, It’s Never Too Late, “we all have an expiration date…we have three choices on how to handle that reality—we can deny it, we can ignore it, or we can plan for it.”
Planning is the process of forethought of what we want to occur, now and in the future. Planning reflects your goals and values.
So, What’s Your Plan? How are you getting started with planning for your son or daughter? You can share your ideas with us by emailing: p2p-co@yahoogroups.com
Be sure to visit The Resource Storeroom for more information on Financial Resources and Planning. Two other helpful resources include: The Arc Future Planning and Wright’s Law Future Planning We also love the resources at Lifecoursetools – these are great visual planning resources to use with your son or daughter to create “a good life” with financial planning included.
Your support, commitment and compromise are unconditional. We’ve had to take many difficult and life altering decisions that wouldn’t have been possible otherwise. For that, I am thankful.
For thousands of families across the world and for ACCO, 2005 was one of those remarkable times when we experienced a significant sea change in the treatment of very young children with a diagnosis of life threatening Progressive Infantile Scoliosis.
