Life is a continuous learning experience. Just when I think I know it all and have it all together, life has a way of breaking into it throwing me for a loop. I am left saying I don’t know it all, but I want to find out what life has to offer. I remember my teacher in Junior High telling us we were the best and the brightest and that we could change the world. I was young and impressionable, and it stuck with me on my life’s journey to experience and to learn.
Life has a way of cycling from success to failure, noble to base, good to bad, but I am still the same person. Over the years, I have questioned this as I have tried to live my disability experience with poise, dignity, and purpose. A good deal of the time I didn’t feel the best and the brightest, especially when I was living off SSI in a roached infested Section 8 apartment.
Experience is an exacting teacher if you are willing to open your eyes and ears. Poverty did leave its marks with fears of returning to poverty–financial security became very important to me. I was born into the middle class and determined to return to the middle class. That is an important lesson that I learned about myself, and others need to appreciate it to understand what I do and why.
Self-Determination captured my imagination ever since I first heard about it now over 20 years ago. I wanted to be in the program because I would have greater control over the services I received. This surprises me because in general I have an aversion to control and hate control freaks! I prefer to be a follower, but in this case, I wanted to take charge and be a leader of my life.
Little did I realize how much self-determination would change me and teach me about life. My road began when I was a Board of Director of SDRC and was on a committee that looked at the design of the self-determination Pilot Project. From the get-go, Self-Determination got my juices going because I like being in the design stage, it excites me to fashion the possible. I am very much an idea person and have a passion for living in my head.
Later when I started working for SDRC, I served briefly in the Self-Determination Unit. Part of my duties was to staff the Resource Room, so I read every book they had on Person Centered Planning. It fascinated me and excited me about its potential for empowering and changing people’s lives.
I attended a conference on self-determination and later I made presentations at SDPF Conferences on Self-Determination. Along the way, I advocated legislators through writing letters on the merits of the Self-Determination. Time passed in 2013 Governor Brown signed Self-Determination into law and three years CMS approved DDS’s Medic Aid Waiver. Then on October 1, 2018, DDS selected me in their lotto to be in its Self-Determination Program Rollout. I regarded this as an outstanding opportunity for me and I took full advantage of it.
I was excited about being in the program but tried to keep my emotions in check. I focused instead to be rational and systematic about it drawing on my years of experience with Self-Determination. I am at my best when I am rational and systematic. I get into trouble when I start acting on impulse.
I was in a unique situation because of my experience with Self-Determination. I knew from the get-go whom my FMS, and PCP agency would be, and I also knew the size of budget–not much. SDRC picked my SC, the best SDRC had to offer–making things a lot easier for me. To make things even easier I decided not to strive for the perfect plan, but to keep the plan simple. I decided to just roll over my then current services over into Self-Determination–ILS, bus pass, and Lifeline medical alert service. With everything being so new to everyone, I figured it would be hard enough to get the simple plan implemented. I proved to be right.
I am a work horse and I enjoy working hard. I can safely say that I never worked harder or wanted something so much as getting my plan approved and to be enrolled in Self-Determination.
I also like to work on one thing at a time but in this pre-enrollment stage, I felt like I was dancing with four partners–PCP document, my certified budget, spending plan, and IPP. This consumed all my time and energy. I was confident that I would get enrolled and on October 1, 2019, I did.
The lessons I learned from that were to work hard, be rational and intentional, communicate, and practice teamwork to go the full journey. It turns out my plan was the first one enrolled at SDRC and in California. I am proud of that.
After a few months, we got passed the startup speedbumps and things started going smoothly. Communication means a lot to me, so every Friday I would send the members of my SDP team, my weekly updates, and each month, I would send them my net worth statement. I believe that financial numbers tell a lot about how things are going in my life. Also, each month I would read my expense statement from my FMS. Everything fell into a nice routine. This reinforced a lesson that I had learned a long time ago, that routine can be a good thing. It might not be exciting, but it does have its benefits. I hate drama.
My routine came to an abrupt halt with the pandemic and sheltering in place. My ILS hours were reduced, and the in-person sessions became Zoom calls. This meant that the amount of the plan spent on ILS fell off dramatically. Later this would take on big significance.
I spend lots of time budgeting and I regard my SDP budget as part of my household budget. Now that I was sheltering in place and working from home, I needed to upgrade my Mac Mini and my iPad to meet the needs of working at home. I looked at my SDP budget and quickly saw that it was too small to finance the upgrade. So, I looked at my savings and saw that I had enough money in it to fund my upgrade. I didn’t want to use credit to purchase my upgrades, so I went with using my savings. This made me feel proud. I hate using credit.
I was happy as a clam with my new home office having all the technology and solitude, I needed to be a productive worker.
As the months went by and the pandemic continued unchecked, I kept reading my monthly statements from my FMS. The numbers showed that I was significantly underspending my budget. One thing I learned from college is to spend your entire budget! So, I talked with my FMS on how to solve this problem. The solution was to purchase items with my unspent funds. So, I went online and researched items that would better help me meet the goals of my SD plan. After a lot of research, I came across items that I wanted. One that I especially wanted was an Apple Watch to meet my specific health needs. Then we revised my spending plan and had an addendum to my IPP done. The items arrived near my birthday, so it was like getting birthday presents.
To combat loneliness and isolation coming from sheltering in place, I started texting and and calling my friends daily. I enjoyed this a great deal, and I drew closer to my friends. That was a major victory for me because over the years I have been dogged by loneliness. I learned if I wanted friends in my life I would have to reach out to others and not expect them to come to me. My friends today are all part of my PCP team.
Then year two of my SD Plan came with my annual review. I brought my PCP team together. That year we met virtually and had a productive meeting. Also, I wrote my PCP document all by myself. That was hard work and took a lot of time and effort. I felt very proud of myself when I submitted it to my SC.
We updated my IPP accordingly, but we made a crucial error in the IPP. We still assumed that the pandemic would be brief, and things would return to normal shortly. Accordingly, I continued to underspend my budget. Months went by and after reviewing the numbers in my monthly expense statements, I decided to reallocate my ILS hours and put them to purchasing items on an ongoing basis. My favorite example of this was purchasing Uber cash so I can get rides to work and not have to rely on mass transit as much. Eventually I would phase out my ILS hours completely. I had grown and no longer needed it.
As circumstances change, my needs change and my support needs change along with it. I’m approaching retirement age and I wanted to come up with a plan so I would be prepared for it. So, I did some research and a lot of number crunching and I concluded that I would be much better off if I delayed my retirement, giving me much more financial security. The topic of retirement is extremely complicated, and I wanted help to come up with my plan. So, I talked with my FMS contact, and shared my concerns and needs. She referred me to her agency’s benefits specialist and together we were able to bring greater clarity to my retirement plan. SDP had the flexibility to finance this.
I am approaching another annual review, year 3 in self-determination. I am amazed how much my current plan differs from my original plan. This clearly shows how much my life has changed and the power of Self-Determination’s flexibility. I am very pleased with how things went last year and look forward to better and brighter days ahead next year. I don’t see much change in the spending plan but there are conferences I want to attend and present at. I hope we can return to normalcy–I am fully vaccinated and am tired of wearing a mask. I want to do more writing and I want to develop more and closer friendships. In general, I feel good about myself and what I have accomplished. I feel like I am in the middle class and will retire financially secure. I feel like I am making difference in my community and that I have grown personally and as a. Leader.
Let me return to the origin purpose of writing this article, lessons learned from being in SDP. To begin with, I have learned that I am in control of my life. I can’t blame circumstance or others from reaching my fulfilment or happiness–It’s all up to me. My life may be modest, but I am part of the middle class. If I want something, I must work for it because life is not an entitlement. I am reaching the point of leaving a legacy and I am working hard to be a mentor to young and up and coming self-advocates so that they can reach their point of fulfillment. Communication is key to achieving success and happiness in life. It is not about me but us because no person is an island. To have friends I must reach out to people.
Life is a journey not an event, so I need to be persistent and patient and follow through. Life is not a plan, but experiences lived out. I can only live life once, so I need to make the most out of it. Most importantly I choose to take pride in myself for a job well done. In success and failure, I am the same person. I have, dignity, value, and purpose being true to myself.