Vincent Randazzo’s son Michael was diagnosed with Down syndrome early in life, leading Vincent to become actively involved with the National Down Syndrome Society (NDSS). Autism Speaks and NDSS are now partnering in their support before Congress for the Achieving a Better Life Experience (ABLE) Act which would allow families raising children with disabilities, such as autism or Down syndrome, to save tax-free for their future needs.
Vincent Randazzo explains how his family’s connection with autism runs even deeper.
When my son Michael was born with Down syndrome 13 years ago, my wife Dorothy and I were upset and sad for Michael that he would not experience a normal life. Because of our circumstances, however, we did not experience the sense of terror that so many parents face when they get the news that their newborn has a developmental disability.
Michael has a brother and a sister who would love him and care for him like any other sibling. At the time, my wife was a public health nurse in the public school system and an advocate for students with special needs. We quickly became aware that medical research had advanced to the point where people with Down syndrome were living much longer and more fulfilling lives, and the future held exponentially greater promise.
I immediately engaged in Down syndrome advocacy, supporting the priorities of the National Down Syndrome Society and serving on the boards of a local parent support group and a national research foundation. But within a few years, everything we thought we knew about Michael’s condition, and how to give him the best chance at living an independent life, was turned upside down.
Around age four, we started to notice that Michael’s developmental progress had stopped and, in many ways, he was regressing. He became less talkative, developed verbal tics, and made eye contact less often. He would obsess about movie videos, ceiling fans, and where we placed his food on the plate. We would attend social gatherings hosted by the local Down syndrome support organization, and notice that he was socially different than most of the other children. He didn’t play or interact with his peers the way a typical child with Down syndrome did.
During family vacations or visits with friends and relatives, Michael would be irritable and disruptive. He would be violent toward other children, grabbing their necks, hitting them in the face or pushing them to the ground. We were always being told that people with Down syndrome were so lovable and good-natured. Why wasn’t that the case with our son?
Around age 5, we started raising concerns about Michael’s developmental issues with his pediatrician and pediatric neurologist, and told that people with Down syndrome have varying degrees of the disability. During one medical visit, we were told “so what if he had autism, what difference would it make?” One neurologist actually treated him for Attention Deficit Hyperactivity Disorder.
At about age 8, we brought up our suspicions about autism withMichael’s teachers and, to our surprise, they acknowledged the possibility. We were referred to TEACCH, a group at the University of North Carolina Medical School in Chapel Hill which works with individuals with autism spectrum disorders and their families by providing clinical services, training teachers and care providers, and conducting psychological, educational, and biomedical research.
The initial screening determined that Michael met the criteria to be tested, and we were put on an 18-month wait list to be evaluated for autism. He was finally tested around age 10. The conclusion was that Michael had moderate autism, and that autism – not Down syndrome – was his primary disability.
We were advised to change the way we think about Michael’s disability and how to plan for him medically, socially and educationally. After having been encouraged to put Michael in inclusive educational, social and family situations where he was continuously failing, we now know that a self-contained environment was best. The medicines he took and the way his medical providers approached his care significantly changed. With the dual diagnosis, he became eligible for supportive services from the State, and his school IEP was revised to emphasize more life skills and social goals.
The dual diagnosis and subsequent changes in the way we approach Michael’s disability have not alleviated his life challenges. In fact, as he has grown older, those challenges have only increased. But the diagnosis has provided relief to our family because we now understand him better. We know that transitions are hard and social situations are so difficult for him, so we know how to plan for them. And I am no longer constantly frustrated and angry with his inability to do simple tasks.
Having more realistic expectations about his progress and goals in life has actually led me to dream about someday starting a business together when Michael finishes school and I retire.
The 20th Anniversary of the Americans with Disabilities Act: A time to Celebrate and to Review our Commitment
This is a guest post by Steven Beck, Vice President of the Down Syndrome Society of Northern Virginia and father of a 10-year-old daughter with Down syndrome.
My name is Steve Beck and I am, most importantly, the father of two beautiful 10, and 13-year-old daughters and husband to Catherine. My 10-year-old daughter has Down syndrome. One result of my younger daughter having Down syndrome is that I have become increasing involved in volunteer work at both the local and national levels. Currently, I am Vice President of the Down Syndrome Association of Northern Virginia and a Board Member of the National Down Syndrome Society.
As we spend time this week celebrating the 20th anniversary of the Americans with Disabilities Act we need to also re-commit ourselves to moving forward. By prohibiting discrimination on the basis of disability in employment, state and local government, public accommodations, commercial facilities, transportation, and telecommunications, the ADA has provided people with disabilities access to all parts of our community both socially and economically. Guaranteeing access is one step, but providing the tools and supports needed to fully engage that opportunity is a different issue. One of the primary tools needed for all Americans and their families is the opportunity to plan, save, and invest money that can be used to pay for critical needs such as education, healthcare, and retirement.
Over the past four years I have been working with group of national organizations, including Autism Speaks, to pass the Achieving a Better Life Experience or ABLE Act of 2009. While government systems such as Medicaid, SSI, and SSDI provide a wide variety of critical supports for our community they simply cannot cover the full array of needs. In addition, many of the rules that govern them drastically limit individuals and their family’s ability to plan, save and accumulate assets to help fill these gaps. As a result, people are forced into poverty just in order to maintain access to these government benefits.
The ABLE Act would establish a savings instrument similar to ones that all other Americans have access to through 529 College Accounts, Health Savings Accounts, Individual Retirement Accounts, and 401Ks. Like these accounts, ABLE Accounts could be set up and managed with little or no cost. The money can be controlled by the individual, their parents, a guardian, or third-party based on decisions made by the individual and their family. There is a very broad array of qualified expenses the money can be used for including healthcare, transportation, education, housing, community based support services, employment training and support and other life necessities. The money in the accounts grows tax-free and can be distributed tax-free as long as it is spent for a qualified expense. Most importantly, the assets held in the accounts cannot be used to disqualify individuals from critical means tested programs such as Medicaid, SSI and SSDI.
Now is the time to provide individuals with disabilities the same types of financial tools that all other Americans use to save for their future needs and to pay for critical parts of everyday community living. The ADA was passed 10 years before my daughter was born and I was still in college. I started working on the ABLE Act when she was eight, and she will be 11 in November. We cannot afford to wait much longer to start saving for her future and neither can millions of other Americans. I want and demand that she have the same opportunities to attend college, get a job of her choosing, and live independently, just like her older sister.
The ABLE Act (H.R. 1205) has 190 co-sponsors in the House and (S. 493) has 24 Senate co-sponsors as of July 24, and well over 40 national organizations supporting its passage. Please, visit www.autismvotes.org/able to contact your members of Congress and ask them to pass this important bill into law this year.
To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org