Change

These days they are a Changing

Change is in the air touching every aspect on career, health, education, technology, and society. I can feel it energizing my spirit and I bet you feel it too. Change fulfills choice, freedom, control, accountability, and confirmation–the principles of self-determination. Self-determination frees us from the constraints of traditional service guidelines and the status quo and opens the door to creatively meet our needs to reach their potential. Only through the stress and strains that come with change can we break the shackles of the same old same old.

Let me share my experience with change, liberating myself from the conventional and exploring the new unfettered future. I had been a recipient of SDRC services for more than twenty years. For most of the time, I received ILS, a bus pass, and an emergency alert service–the tired same old same old. I thought this was as good as it gets and that my needs were being met and that I was happy with that. Little did I realize my needs weren’t being met and that I needed different services and supports. I would find this out through self-determination.

My days in Self-Determination began in 2018 when DDS selected me to be in their SDP roll out. SDP is what you make of it, and I choose to be a workhorse. Looking back at it I most probably didn’t need to work so hard, but I wanted to be enrolled into SDP so badly–it was a case of pride. i didn’t want any changes in my service plan. I just wanted the status of being in Self-Determination. That may not have been a compelling reason, but it worked for me. On October 1, 2019, SDRC officially enrolled me in SDP.

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. 

Some change in life I welcome and others not so much. I love Apple Technology and relish staying on its cutting edge. Uber and Lyft have added excitement and value to public transit. I am quite taken EV and other earth friendly technologies. But when it comes daily living, I am a creature of habit and like the 9-5 routine. In this regard change comes for me with greater effort. For some change doesn’t happen all at once, but gradually overtime it happens like a glacier sliding into the sea to become an iceberg.  Change didn’t come to me naturally or at a moment of inspiration. My motto is if it’s not broken don’t fix it. Change came to me through SDP.

Let me set the stage for a major change in my life. Loneliness, isolation, and alienation has gripped me all my adult life. Part of the reasons why I had an ILS worker i was easing the sting of the estrangement. When the pandemic started, I started the practice of texting and calling my friends daily. This meant a lot to me, and I drew closer to my friends. I learned that if I wanted friends, I would have to first to reach out to people and not expect them to come to me. I learned what friendships were about and what it was like to spend time with them. That was truly beautiful and something new for me.

Well, when the pandemic hit and sheltering in place became the law of the land, I had to change, and I started wearing masks. I enrolled in the Meals on Wheels’ meal delivery service. I subscribed to Shipt a grocery delivery service. The biggest change came in my home office. I decided to upgrade my Mac Mini and my iPad. I went online to the Apple Store and found out how much the upgrade would cost me–ouch! My Self-Determination budget was too small to finance the upgrade. I did have some money set aside for emergencies. I don’t know if upgrades count as an emergency, but I used those funds to purchase them. So, I purchased my new Mac Mini and iPad Pro and in short order my home office had the latest and greatest Apple technology. I felt proud of what I accomplished and didn’t have to go into debt to do it. But I wouldn’t have done it without the pandemic. The saying necessity is the mother of invention, in my case change, holds true. 

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. 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. 

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. It felt good being with all my friends even if it was virtually. 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. 

 I was locked into old ways of thinking. 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.

Let me turn now to subject to ILS. Circumstance thrust a change on me regarding ILS. In-person visits became Zoom sessional and my weekly hours were reduced. I had used my ILS to assist me with my financials and companionship. Because of the limitations of Zoom, I learned how to handle my finances by myself. Also, I discovered that the relationship that I had with my ILS worker didn’t compare to that of my friends. I concluded that there was no rational reason for me to continue with ILS. Eventually I would phase out my ILS hours completely. I had grown and no longer needed it freeing up more money to go to Uber cash.

As circumstances continued to 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. This is a huge step in change. I am getting to like change but not all at once.

Where do I go from here? I don’t know. My present spending plan has changed a lot since I first started SDP. I don’t know if it is a lack of imagination, but I don’t see other services I want. Thinking outside the box is harder than it sounds. My passion is promoting self-advocacy and self-determination. One way that I am doing this is I have started a blog dedicated to self-advocacy.

I want to attend conferences and to make presentations at them. I want to serve as a mentor and assist new members reach their dreams through SDP. I want to work at systems changes to make it easier for participants through the pre-enrollment process. It shouldn’t be that hard. Time and effort should be reallocated from process to creative problem solving. A well written plan may not be the best possible plan for a participant, not that I am a fan of sloppily written plans.

Just as change is the foundation for self-determination, it is the basis for self-advocacy. Before I close, let me tell you what Self-Advocacy means to me. It is the social justice movement where we, people with developmental disabilities, individually and collectively take charge and responsibility for our lives and voice our wants, needs, and dreams to our family, friends, regional center staff, direct care providers and government leaders. 

My understanding of self-advocacy has grown also evolving into interconnectedness, the belief that everyone is connected and equal. Through our diversity, we bring wealth and prosperity to America and celebrate our disability pride.

There are simple steps you can take to advance self-advocacy in your life:

• Get to really know yourself, your wants, needs, and dreams
• Communicate with your family, friends, co-workers, regional center staff, and direct care providers issues that really matter to you
• Link up with other self-advocates and find common ground and vision
• Join a People First organization or self-advocacy organization
• Share your story with the media, legislators, and other government officials

Change is not about pleasing people and winning a popularity contest. Advancing our individual or collective self-interest may unsettle others, especially the powers that be, but it is our right based on person-centered planning and the law.

Developmental disabilities last a lifetime and are life-limiting. Self-determination can’t spend its way out living with disabilities, but it can instill pride in our whole self. We can shed the shame of having disabilities and own the pride we rightfully deserve. We are all part of the greater human family with each of us having something to contribute because we are all interconnected. Our differences pale in comparison to mutual value, dignity, and purpose. We all share in having hopes, longings, and dreams. In its small way self-determination can make this happen. It can bring change to our unfolding world.

Once we get a taste of change, we won’t settle with just a change in the delivery of service system. We are tired of paternalism, wanting instead equality. We are tired of living in poverty and want other aspects of our life to change-housing, employment, education, transportation, accessibility, and integration. We want our right to vote to be recognize and honored, and government officials to take us seriously. We are tired of living off entitlements and want to earn our daily bread. Most importantly we want society to discard old fashion attitudes and prejudices of people with disabilities and to welcome us in the greater community treating us with dignity, respect, and civility. We are tired of waiting and want it now!