Diary of a Dream is our story of planning and working toward building a full life for our son James, when he turns 22. Reflecting back, there are literally hundreds of people who have touched our family by sharing their knowledge and their experiences. In an effort to give back to those who have taught us so much and to provide others who face similar challenges with information that they can apply to achieve their own dreams, we are publishing Diary of a Dream, an informational blog on transition and housing. Since every experience is unique, these blogs cannot be a how-to manual but we hope they will provide information and inspiration to use for your own loved one.
Our first post will feature John's Perspective first, scroll down to read Susan' s Perspective. We will alternate the Perspective of the lead blog each posting. Please feel free to share this blog with others and like us on Facebook!
John’s Perspective
Building a Home
I. Everyone Needs to Plan
The Tipping Point
James is now 22 and continues to put a big smile on my face every day. In order to lay the groundwork for discussing transition planning and housing, I will begin with the events that made me realize I had to plan for the future. Although no two situations are the same, this story serves as a point of reference in viewing the planning strategies Susan and I used in planning for our son.
About three months before he turned 1, James developed a significant seizure disorder and had to be hospitalized for the better part of a year. This resulted in Susan spending many nights in the hospital with James while I held down the fort at home with our other 2 children, or vice versa. Without going through the details, things became very challenging and the day to day issues that would ordinarily be considered simple became extremely complex and time intensive. The tipping point came when the Disability Law Center took our case to arbitration for supports from Medicaid. We “lost” this decision. However, this battle early on was the energizer that gave us the motivation to have an impact. There were many agencies involved trying to provide help, but despite everyone’s efforts we felt that we were alone.
I decided to take a look at the DDS and actually made an organizational chart of the agency. I began talking to people there and Susan and I were directed to a Leadership forum that changed our lives. It brought us into a community of people who understood and worked together to try to utilize the resources available . Fortunately, James stopped having seizures and was able to return home and things returned to a more normal pace. But I was convinced that somehow I had to save for the future. I could not rely solely on public supports and had to plan to secure a life for James and our family.
Regardless of whether your child is 1 or 21, it is crucial that you learn about the supports that are available to you and your family. They may or may not be financial but the knowledge and empowerment that comes with this experience enabled us to better advocate for James and our family.
Real Estate became the Foundation for our Plan
When Susan and I were first married and started our family we owned a multifamily home and lived in one of the units. The cash flow from the rental unit allowed us to build some equity, and also provided us the opportunity to purchase another investment property. Just before James was born (1991) our family moved to a single family home in Melrose and kept the investment properties.
I wish I could say that owning the properties was easy, but as property values continued to fall throughout the early 1990’s it felt like we were swimming against the tide. During this period it was very disturbing for me as everyone was selling their real estate holdings. It seemed that the markets were driven by emotions rather than analyzing the facts. However, after examining the total financial picture by calculating the return we were making each month from the rents, it made overwhelming financial sense to hold onto the properties. I just kept my focus on the positive cash flow that the properties were generating.
Ultimately, property values rebounded and continued to increase through mid-2005. In direct contrast to the early 1990’s, it was easy to feel really good about our investment properties because real estate prices were at all-time highs. This “good feeling” began to trouble me as the dynamics of the market had seemed to change- everyone wanted to buy!! After doing the same analysis that I did in the early 1990’s, it made financial sense to sell the properties.
The proceeds from selling the properties provided the seed money for purchasing the property for James and his future roommates.
Planning Principles
Different principles apply to people at different times. However, there are certain basic principles that are general points of reference.
- Remove emotions from financial decisions
- An underlying principle in planning is to remove emotions from financial decisions. It is important to follow a process and basic principles when making financial decisions and not get sidetracked by headlines and market euphoria.
- Focus on Cash flow.
- One of the most important components of investment real estate is cash flow. This concept will be discussed in more detail in later writings.
- Planning for Life
- A common mistake made by families is to develop a false sense of overall family security after they do their wills and trusts. It is very important to plan for the most likely scenario that you will have a full life ahead.
Susan's Perspective
Creating a Full Life
Teaching and Learning
There has been a lot of positive change enacted over the years to provide access to quality health care, education, and increased options for individuals with special needs. However, a lot more needs to happen until people with disabilities are truly valued members of our society. I think of all James has taught me and our family about patience, kindness, hugs and love. As his mother my role is to listen to him and, even though he doesn’t speak in the typical ways, acknowledge and respect him. I know he must be taught to advocate for himself while encouraging and teaching those around him to listen with their hearts as well as their heads.
I spent much of the early years with James in a constant quest for good information. The best training I ever attended was the Massachusetts Families Organizing for Change leadership series (www.mfofc.org). James had a couple of extremely rough years, having been diagnosed with infantile spasms, a particularly challenging type of seizure disorder. He was found to be eligible for respite services through a state agency and they allotted hours of nursing care to him and then suddenly, the hours were cut. John requested an organizational chart to figure out who within that agency was in charge of our family. It was then that we found out about the leadership series through an incredible advocate within the Department of Developmental Services.
Our amazing advocate, Judy Curry, encouraged us to attend the leadership series in Southeastern MA to help us understand the system. It took a tremendous effort to attend the training sessions- they required a commitment of six full days and overnight stays- but we were thrilled with the opportunity. The Department of Developmental Services paid for the training but we needed to find people to care for James and our other children. My friends and a few paid people did two of the weekends and family came in from out of state to cover the remaining weekend enabling us to take this giant step forward for our family.
The Leadership Series
The leadership series gave John and me inspiration, as well as the determination, to achieve a great life for James. We were introduced to other wonderful families dedicated to the same goal. The training focused on providing an overview of how we could make a difference and how to determine what is worth fighting for. It helped us develop a vision and define our values, which gave tremendous clarity and focus about what was most important for James and our family. Lastly, appreciating how the legislative process works and why we need to be active participants in order to impact not only James’ life but to make the world a better place for all.
Empowerment provided the Foundation for us to Achieve our Goal
Getting our priorities right at that early junction helped us seek out opportunities and confidence to speak up and out when needed. With assistance from Judy Curry and Walter Bacigalupo, I was able to bring the MFOFC Leadership Series to the northeast. I am always mindful of a wonderful man I met in this first series who was a widower living with his adult daughter. He told me about his nightmare of not being able to “settle “ his daughter into a supported living arrangement before he died. He hadn’t put anything into place when shortly after the series ended, he died quietly in his armchair. We started planning the first Housing conference shortly thereafter in 1996. This man’s nightmare broke my heart and became a focus for planning for James and others so this wouldn’t happen to anyone else if we could help it.
