Susan's Perspective: Creating a Life
Snow Day - January 2014
Out with the old and in with the new: regroup, purge and organize are what all of us do at the beginning of a new year.
James and I spent an entire snow day going through twelve years and eight different school placements worth of IEPs. The educational system was a huge challenge and looking back on our experience brought back a lot of feelings. Shredding his IEPs was very therapeutic; one friend confessed to me she burned hers. The papers were gone but the memories remained clear.
The IEPs represented the countless different teams of people we sat in front of and the variations they presented at each additional meeting, with each person weighing in on the recommended educational process for our son. When I look back at our stacks of vision statements they had a common theme that did not alter much. From the very start we wanted James to be a good citizen and to have meaningful relationships at school and in his community. We always anticipated James living away from home in a supported living arrangement and increasing his independence was always a priority. What we had to negotiate each year, with a variety of overworked teachers whom we assume meant well (except for a few), was what was needed for him to progress. These negotiations hinged upon what their perceptions of James and his abilities or lack thereof were and how they would support his accomplishing these goals.
Our earliest experience was bringing James to the local school to begin preschool and finding out there was no such thing as an integrated or included setting. James first placement was out of district to the least restrictive setting ~ an integrated classroom. It was tough getting him back but it happened after two years in another town’s preschool, two years in a fabulous collaborative and another year at a disastrous elementary school in yet another town. Along the way I met remarkable parents who were passionate and determined to get reasonable educations for their children. Their perseverance, when battling to get a quality education for their child who was non verbal or behavioral, was awe-inspiring.
We asked our town educators to please try to include James and their efforts worked extremely well for the first and second grades. The third grade teacher made it clear form the start she did not want James in her class. She treated him with disdain, so much so that the children who had grown fond of him and included him naturally took notice. The school administration had changed and I kept James home fearing for his safety at school. He was once again placed outside of the district.
Low expectations and narrow fields of possibility defined the out of district placements. They ran their systems on a less individualized basis than anything the public school had come up with. I brought in a video to one placement showing James reading with his tutors, young women I hired weekly to keep him learning. The school had refused to believe he was capable until I called a team meeting and asked them to provide a big screen to view James’ love of words and reading abilities.
One school had no criteria to advance to another classroom. A student was placed with a particular teacher and that’s where they stayed for one, five or however many years, with the same students who deserved bigger worlds and better opportunities.
Our public school paid a lot of money to schools claiming to know (and to do) better.
Better in our case came when we convinced our local school to give James another chance at being educated in the community in which he lived. To learn, to work and become known by people who cared about him and were willing to give him a chance, was our goal for James.
There is such a fear of the unknown- turning 22 was also turning away from everything familiar. In shredding James’ IEPs, the familiar wasn’t warm and fuzzy. It was predictable. The new year is also a time to envision a new start and new opportunities to do better and to be better. James is the leader of his team, he is the star in his life and we are all here to support him. For him, life is no longer about fitting into a mold but about breaking out and learning and living in a big wide world of possibilities.
Our Section 8 Housing Choice
We completed a Section 8 application* on the day James turned 18. Although at the time we did not know what James' residential plan would be, we were not concerned for the voucher can take years to obtain. This was a critical step towards our dream- for James to live “on his own”.
Last August we received a notice in the mail from the housing authority informing us that James had come to the top of the list for a Section 8 voucher. We were asked to provide documented proof of James’ income (bank statement, SSI, employment), citizenship, a doctor's note and social security identification. After all the paperwork was found to be in order, we were given an appointment to learn how to begin the Section 8 process.
In our case, although we were excited to get the voucher after only three and a half years, a lot shorter than the ten years we had anticipated, we were not ready. We had purchased the property and had been working on our vision for James’ future, but half of the space that he was going to living in was essentially a shell; no walls or electricity! We were encouraged by several people to not turn the Section 8 down since we would go to the bottom of the list. So a Plan B had to be developed.
Plan B: An In-Law apartment
We researched the possibility of creating an in-law apartment in our home. From a technical perspective, every city or town has different definitions and rules for in-law apartments. Our town(Melrose, MA) is specific about use for family members only and has a three year time frame before needing to be renewed as an in- law. From a Section 8 perspective, the key is to make sure that the city or town classifies the in-law as LEGAL. Additionally, since we are relatives of James, we required an accomodation with Section 8 to be his landlord.
While our first thought had always been to have James live in his own home, the idea and reality of helping him to acquire more independence while living in a separate space with us was perfect. Meeting the definition of a rental was only step one in realizing this new plan. The second step was to get the public approvals necessary to build the in-law and this was a time consuming process. We met with the town planning board, and the board of appeals, and navigated the permit and inspection process. To gain approval, we were required to draw up schematics of the each floor of the house. We worked with our plumber and builder to prepare the technical building requirements and got feedback from the building inspector in terms of code requirements.
Typically the housing agency prefers that a Section 8 recipient use their voucher within sixty days of receiving it. This time frame did not work for our unique situation. Our local housing authority did not seem to have experience working with individuals with intellectual disabilities; they typically linked these individuals up with non-profit agencies on group vouchers. We connected with a member of the local housing board and after explaining our goal in a housing agencies public meeting, the concept was embraced. We wrote weekly updates on our progress to the Section 8 voucher coordinator and kept her in the loop as the the housing authority accommodated our extension.
The photo above is James' bedroom in the in-law- click here to see more photos of his new digs! This was the beauty of working with the local housing authority : we all learned something and got the result that was best for James.
There are many applications of using a section 8 voucher-this is clearly not a one size fits all situation.
Here are some options:
1. The family can purchase and own a building and rent to their child who has a section 8 voucher. (an exception is required where the owner is a family member, but exceptions are very common if the individual has a disability.)
2. A Special Needs Trust can own a building and rent to a child who has a section 8 voucher.
3. A family may purchase a condo in a building and use the section 8 voucher to collect rent.
4. You may apply for a 2 Bedroom voucher if you can show that 24/7 supports are needed.
An investment by parents in a residence in which their child will live is a factor in their own personal tax, retirement and estate planning. The key is to determine the best situation for you and your family. If you have questions regarding your own individual situation, please give us a call.
*A MUST DO: Apply for The Section 8 Housing CHOICE Voucher
An important step every family should take in planning for the future is to apply for a Section 8 housing choice voucher when their child turns 18. While the application is easy to complete, the actual time frame to get a section 8 voucher can be years.
A section 8 voucher allows people to choose their own housing anywhere they want to live. If the Section 8 recipient moves, the Section 8 rental assistance goes with them. The individual vouchers are not limited to particular housing developments like project-based vouchers. Families with Section 8 tenant-based vouchers can choose any apartment they want, as long as the rent is reasonable and the unit passes a physical inspection. The application process is simple, the application form is generally one page. A great resource for information about the Section 8 application process is http://www.massresources.org/section8.html .
This commentary is provided as general information and not intended to provide specific advice.
Creating a Full Life
II. The Importance of Showing Up
We must delight in each other, make other conditions our own, rejoice together, mourn together, labor and suffer together, always having before our eyes … our community as members of the same body. ~ John Winthrop, 1630
Belonging and community was just as important in 1630 as it is today. After James was born, I found that a major component of my community was redefined for me: I was forced to give up the business I had founded and really enjoyed. Businesses are like babies in that you must devote time and energy to form one and can receive great personal satisfaction when successful. Leaving my business and the altering our family’s life and income was a sacrifice I had to make since James required attention 24/7.
They say that desperation is the mother of invention and in the early years with James, I was consumed with worry about how I was going to give James all of the help and support he needed. He required motor planning and did not have the upper body strength to sit in a chair and cross the midline. My choices were to schedule sessions with the occupational and physical therapists (with money we didn’t have) or to spend some serious time on the monkey bars at the local playground. Early on I thought if James didn’t have the “special therapies” that the professionals prescribed, I’d be a bad mother. It didn’t take me long to realize that if we didn’t do activities that were fun and affordable as a family, we would not survive.
I chose community playgrounds and generic activities. There will always be expensive, segregated programs available but if we want to be accepted and belong in our community – we had to show up there. One of our earliest experiences was at a YMCA that had an outdoor pool. I think we met everyone that ever went there, as James liked to take off on us and didn’t mind checking out and devouring everyone else’s picnics. The other Y members gradually got to know our family. Many of them are our friends today.
I encourage you to choose fun – make opportunities for regular activities and keep trying. You don’t get good at anything without practice. Movies, mini golf and going to church have been tough for us. We try again, getting discounted movie passes and staying for just 30 minutes and it is a little more bearable. We learn that sometimes a little bit is just enough.
Building a Home
II. Planning: Just Do It
| Everyone was part of the plan.
Since the time James was born in 1991, the financial world, government benefits/regulations and our personal planning strategies have changed; but our vision for him has not changed. My personal goal was then and remains today to put us in the financial position to have some control in creating the “perfect” life for him. I recognized and really counted on Susan’s depth of knowledge and her ability to define and shape this life. Now I just needed to find a way to pay for it!
How we planned to get there
I am the first to admit that our financial strategy is somewhat unique, will not be a model for most people to emulate and may be considered on the edge of a “textbook plan”. I chose real estate ownership as the cornerstone of our strategy for three reasons:
• I get a lot of personal satisfaction pounding nails, painting, …
• I do not let any potential issues with tenants bother me at all
• It can provide continuous cash flow
I will use our strategy as a spring board to present some general guidelines for individuals to use to devise a plan that works with their own situation. The key is to develop a vision, be able to identify an opportunity and ultimately be in the financial position to capitalize on this opportunity.
The first step is to plan for your personal financial security. This means you are either financially secure today or you have a plan where you will ultimately be secure. In our case, this meant providing for James and for Susan’s and my retirement. In your case, it could be retirement plus other goals, such as a college education for your children. The usual way to fund retirement plans is from earnings. A traditionally accepted target for retirement savings is to start early and save 15% of your income for retirement. In our case, I was not able to save for retirement early on because I was building my financial planning practice. However, when we sold our properties in 2005 and 2007, I made up for this.
Another step is to set a general goal to have a balance between retirement savings and non-retirement savings. In our case, the sale of our properties created a major imbalance. Since we were short on retirement savings I had to make up the difference and moved the proceeds of these sales from my savings into retirement plans. I used this money to fund our retirement plans to the maximum allowable level. Since I am self-employed, I can fund a SEP(Self employed pension plan). The main reason is that this balance gives you tax planning opportunities during retirement. Although Susan and I do not have enough money yet saved for our personal needs, we do have a plan in place.
John Nadworny's Financial Plan
for a Family with Special Needs
Featured in Money Magazine
Over the many years, in our presentations about financial planning for families of people with special needs, we always referred to ourselves as NOT the typical Money magazine family. Times have changed.
Last fall, John received a telephone call from Jeff Howe, who was writing an article about financial concerns of families with a child with special needs. Jeff’s interest extended beyond the story he had been hired to report- his 5 year old son Finn is diagnosed with autism and other significant medical conditions. Like many others in his situation, Jeff and his wife Alysia were distressed and completely overwhelmed with trying to figure out what it would cost to raise their son and take care of the rest of the family.
According to the US Census bureau, nearly 1 in 5 people in the US have a disability, with half of them reporting the disability to be severe. ¹ About 1 in 88 children has been identified with an autism spectrum disorder.² Given the vast number of families dealing with providing and planning for their loved one with a disability, there are a number of financial planners claiming expertise in special needs. Jeff interviewed and moved beyond several of them before finding John through an online search. Finally, he had called the right person.
John Nadworny was familiar with scary math: his youngest child James was turning 22, the age at which school districts relinquish responsibility for a special needs child. James has Down syndrome and John and his family planned and prepared for years to provide James with the means to have an independent and full life. To read about the Nadwornys’ experience planning for their son’s transition to independent living, click here: Diary of a Dream.
John applied his 20 years of experience in financial planning and knowledge of the costs of a child with a disability and walked the Howe family through a process to help them reach their goals. The result is “Paying for Finn: a special needs child”, Money, May 2013.
Click the link below to read the full story.
¹Americans with disabilities 2010
² CDC Autism and Developmental Disabilities
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!
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.
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.
Creating a Full Life
I. Listen with your Heart
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.
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