Friday, June 30, 2017


On Wednesday June 28, 2017 one of my very dearest friend, Hoffi, (Stephen Hofmann), whom I've known since I was 4 years old, passed. He has been in Hospice for close to a year. He was quite ill for several years before that. When I answered the phone and heard his daughter's voice I knew he had passed. I was actually expecting to be on a conference call at the very moment. For a second I was confused as to what to do. As soon as I heard the words, “Hoffi passed” tears began flowing. I cried louder than I've cried in many many years. Regardless of how comfortable one may be with death, and regardless of how much one knows that a friend's death is inevitable, hearing the words the a loved on has passed is unbelievably painful.

I met Hoffi when I was in kindergarten along with Michael Ward and Judy Heumann. The 4 of us have remained very close friends. Michael, Hoffi and I have very similar disabilities. We all have significant speech impairments. We walked, CP style, as kids and use powered wheelchairs as adults. We all have been able to do most activities of daily living very independently until recently. At camp we were called 'The Three Sisters'.

Among the many things I've learned from Hoffi, learning to travel the New York Subway System independently was probably the most significant. In the late '60's and early '70's none of the subway stations were wheelchair accessible. Hoffi and I would get ourselves and our manual wheelchairs to a station by propelling the wheelchairs with our feet. At the station, we would park the wheelchair near the staircase, sit ourselves down on the step, and bounce ourselves down or up the stairs. Many people went passed us. Most people gave us very weird looks. Inevitably someone would stop us and ask if we needed assistance. We would point to our wheelchairs and they would go bring the wheelchairs to the platform we were headed to. Quite often, police appeared, telling us that what we were doing was illegal and asking for ids. Occasionally they would call the universities we attended to confirm our student status. What was the most important lesson learned from all this was that there is always a way to get to where you want to go and do what you want to do. It also taught me that if hundreds of people pass you by and only 1 person stops to help, that 1 person is enough to help you succeed.

The greatest gift Hoffi gave to the world is his daughter. Emily, like her Dad, is the kindest, sweetest, fun filled, life-loving person you can imagine. Hoffi lived in the San Francisco / Bay Area where Emily was born and raised. Hoffi left the Bay Area to pursue a PhD at the University of Illinois. When Emily had difficulties, she allowed me to be the 'uncle' I always wanted to be. We shared good times and hard times. I visited her in Idaho and Southern California. Little did I know that in a few more years the table would be reversed and Emily would give me the support I needed. Starting in 2011, my ability to function independently declined rapidly. Hoffi had lost his ability to do most of his activities of daily living independently a few years earlier. Emily was one of my first attendant. She got me up 5 mornings a week for more than a year and often helped me to bed at night. Perhaps more importantly, she helped me remember I was still the same guy I've always been. Emily moved back east when Hoffi entered hospice to be with Hoffi.

Denise and I saw Hoffi for the last time when we were in New York in December, 2016. I was able to have time alone with him. I asked him if he was ready to go. He said 'no'. He said he wanted to see a grandchild. It made me feel good knowing he still had goals to strive for. While this goal was not met, it renews my belief that striving and failing reaching a goal is always better than not having a goal.

At my memorial, instead of having people go on and on as I just did, I hope one person will say “he was a good guy,Go! Go! Go!” Hoffi, you are a great guy. Go! Go! Go!  

Tuesday, June 27, 2017

Real Healthcare Reform

(I sent this to President Trump on 06/27/2017)

Real Healthcare Reform

Mr. President, the healthcare bills proposed by the House and the Senate are not the great healthcare reforms you promised and millions of Americans need. These bills, like the Affordable Care Act (ACA), address health insurance reform, not health care reform. Until we truly reduce the cost of healthcare, it will not be affordable to many millions of Americans. There are many things we and our legislators can do to lower healthcare costs.

We can, for example, invest in medical research. Preventing diseases and finding cures or treatments will dramatically reduce healthcare costs as well as improve lives. The costs associated with Alzheimer disease is estimated to be $20 trillion in the next 40 years. It already comprises 15% of the Medicare/Medicaid budget. We can reduce the time it takes to bring new treatments and drugs to market. We can ensure that the U.S. Food and Drug Administration keeps up with modern technology. It takes an average of 17 years to bring some drugs to market. It is estimated that reducing this by 1 year may save $1 trillion. We can automate Medicare/Medicaid billing and payment systems, incorporating fraud detection algorithms now used by credit card companies. This will significantly reduce the $100-$300 billion lost annually to fraud.

The most important and most immediate way to reform healthcare is to rethink how we view disability. We must stop viewing people with disabilities as unhealthy and unable to work. We must recognize that expenses related to long-term disability enable people with disabilities to live full and productive lives in their community and are not healthcare costs. As an example, most people with long-term disabilities who use personal assistant services to get out of bed in the morning do so not because they are unhealthy, but because they plan to be active that day. We should establish a new Community Independent Living Fund to pay for such things as personal assistant services, on-going therapies, durable medical equipment and maintenance drugs for people with long-term disabilities. Extracting costs associated with these goods and services should significantly lower premiums and costs associated with pre-existing conditions. It will also enable millions of people with disabilities to leave Social Security rolls without fear of losing services they desperately need to survive. Please see Community Independent Living Fund for more information.

As background, I am a person with Cerebral Palsy. I have a significant speech impairment. I use a powered wheelchair and I use personal assistant services for many of my activities of daily living. My wife, who also has Cerebral Palsy, and I live in our own home in Oakland, California We have a great son who is now 30 years old. I have always been quite healthy – knock on wood. After 29 years of working at Wells Fargo, I retired as a Sr. Vice President from their IT area to start a disability-focused employment company that specializes in consulting on staffing and placement issues.

These are only a few of the many ways we can lower healthcare costs while significantly improving the lives of millions of Americans. Rather than reforming health insurance, now is the time to work together to truly reform healthcare in a bi-partisan fashion, taking advantage of technology, medical breakthroughs, and innovations. Now is the time to expect all Americans to live up to their potential by providing them with products and services needed to succeed. Let's not squander this time. Let's truly make America greater. Please let me know how we can move these ideas forward.

Go! Go! Go!

Neil Jacobson