Creating Tomorrow

Creating Tomorrow

09/21/2017

Today is Rosh Hashanah, the Jewish New Year. I woke up to find an email from Temple Sinai saying that someone had defaced the synagogue's exterior walls with anti-semantic slurs. The email went on to say that the graffiti has been covered up with paper and urged all of us to write loving thoughts on the paper as we came to services today. At the start of services, our rabbi asked all of us to turn to our neighbors and give them a big hug.

I cried when I read the email. I cried as we drove to Temple and I cried as services began. I cried for my parents, especially my Mom, who survived the Holocaust. My Mom still cries everyday remembering the persecution she and her family and friends suffered because they were Jews. I cried thinking of all the DACA people who are scared today of perhaps being deported. I also cried for the people who defaced our beautiful synagogue. What was it about their lives that made them hate? Why did they want to hurt other people? What do they need that they aren't receiving?

Like most people I know, I am horrified and detest the rhetoric and tweets coming from our President. He has, however, opened our eyes and helped us see how unhappy and hateful so many Americans are. The question now is, what can and will we do about it?

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As I was reading the prayers today, I was thinking that we are not adequately preparing ourselves for the next stage of evolution. Technology is dramatically changing the world. Climate change is happening. The gig economy and globalization is changing the way we work and live. Our laws, politics, morality and spiritually are not evolving as quickly as the world needs them to evolve. We seem so fearful of the future that we are desperately hanging on to the past.

My greatest hope for the new year is that instead of fearing the future and blaming each other for how we got here, we get excited about creating tomorrow. Instead of fretting about how terrible fossil fuel has harmed the environment, lets be excited about solar and get better prepared for global warming. Instead of trying to lower healthcare cost by denying healthcare to people who need it, let's get excited about finding new cures, drugs and protocols faster. Let's consider single payer for long term medical expenses and separating these expenses from healthcare. Instead of trying to reinstate yesterday's jobs by tweaking yesterday's laws, let's prepare ourselves for the era when machines and artificial intelligence will do most jobs better than people can. Let's create tomorrow in such a way as to ensure that everybody has what they need to be safe, cared for and needed. This is how hate will be eradicated.

I started the day crying. I'm ending the day hopeful again.

Go! Go! Go!  

Hoffi

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!  

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

Neil@Abilicorp.com 

Re-Assessing My Work May 2017

With all that is going on in Washington DC, and as my progressing disability seems to be requiring more and more of my attention, I've re-prioritized the work I and Abilicorp will be focusing on.

Wells Fargo and the Disability Financial Management App

In the current political environment, I don't see Social Security changing their definition of disability and thus eliminating work disincentives for people with disabilities any time soon. There is a need for easily accessible software that can guide people with disabilities and their family and friends through the labyrinth of agencies, rules, regulations and financial instruments that is required to adequately manage and maximize ones finances. I am thrilled to be working part time with a team at Wells Fargo. This summer, we will be evaluating the effort required to build, promote and maintain the Disability Financial Management App

The Community Independent Living Fund

Eliminating federally regulated work disincentives for people with disabilities remains a high priority for me. Believing there's always a way to achieve ones goal, I've been thinking of ways to ensure workers with disabilities can receive services they need, cut healthcare costs for everyone and leave Social Security as a safety net for people who truly cannot work. Please read Community Independent Living Fund and give me feedback.

I-Love-Fresh-Food

Ensuring my son's new mobile food service business continues to grow has become a priority. David Jacobson is a really good chef. He cooks fresh organic food in a wood oven stove that he brings to events and parties throughout the San Francisco / Bay Area. Check out I-Love-Fresh-Food

CareerACCESS

The World Institute on Disability continues to work diligently finding states willing and able to pilot CareerACCESS. Piloting an employment services program that ensures each participant,working with a career coach, will receive the services, training and encouragement they need to build and continually grow their careers. Showing pilots successes should convince Congress and Social Security to change their antiquated definition of disability. CareerACCESS has been the main focus of my work for the last four years. It is very exciting to know there are great people at WID and in states throughout the U.S. who will now take CareerACCESS to its next level.

Living with Cerebral Palsy, Go! Go! Go!

One of my best friend and a great theologian, Ched Myers, always tells me we are here to tell our story. Recognizing that Denise Jacobson is undeniably the writer in our family, I nevertheless feel the urge to document the unbelievably exciting wonderful life I have. If not now, when?

Please let me know if you have any questions or advice about any of these projects.

Go! Go! Go!

Neil 

Disability Financial Management App

A Disability Financial Management App

Make It Easy to Plan – A Concept Paper – May, 2017

This concept paper focuses on the design and development of a technology platform to serve the financial planning needs of people with disabilities who live independently and work in their communities.

Americans with a disability can use 21^st Century technology to manage the use of disability benefit systems while planning and building careers. The technology and expertise are available to develop these tools.

Online budgeting and planning tools are available to clients of Charles Schwab, Wells Fargo, and other financial service institutions. Retirement and mortgage calculators are ubiquitous. The Disability Financial Management App will expand the features of such tools to include modeling changes in income for those who use selected state and federal government benefits systems while building a career, or transitioning into retirement from a job.

Project Objective: Design and implement features people with disabilities could use in an online app to plan and better manage their personal budgets and funds in real time. Many users of this app may use, or need to use, public benefits including Social Security’s Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid, and Personal Assistant Services.

The app could serve budget preparation, planning and projection activities, and with crucial protections built in, could transfer funds or data to third parties using encryption technologies.

Functionalities to should include budgeting modeling and calculations, disability benefits calculations and rules related to changes in income or status, fund transfers between financial institutions and others, bill payments, and data reporting functions both to the user and then to selected government or financial services with the user’s permission.

Project Outcomes; This app intends to enable users to manage and optimize their income and assets when also receiving disability-related services. The app will:

1. Assist users to identify their financial needs and goals, including disability-related income and expenses;
2. Optimize financial planning by identifying appropriate disability-related and/or employment support programs and services;
3. Assist users to build and maintain budgets that comply with complex government regulations;
4. Transfer funds to tax-advantaged accounts and dedicated accounts used for disability-related expenses to protect income and assets from disqualifying users from receipt of needed services;
5. Automate recurring disability-related and other bill payments; and,
6. Produce financial reports including reports required by government agencies.

Organizations such as the World Institute on Disability (WID) and the National Disability Institute (NDI) have subject matter experts who could partner with financial institutions to develop such a project.

Context and Background

Disability Benefits 101 Information Services at WID

WID has developed disability benefits calculators (DB101.org) that serve a range of state residents with disabilities who are building careers or changing jobs. These tools enable residents in Alaska (Fall 2016), Arizona, California, Michigan, Minnesota, Missouri, New Jersey, and Ohio to understand and better manage how wages can affect their state or federal disability benefits. The Earned Income Tax Credit and other benefits are also modeled within these free online planning tools.

These tools and their technologies could be foundational for building an app with some or all of the features described above.

Wells Fargo could develop and market the app on their own, or in conjunction with WID. With our 14 years of development and expertise in this domain, WID brings to the table its experience that no one organization on its own has the breadth and depth of capacities to develop this niche of online tools and services. WID needs new partners and sources of development funds to bring the design work and experts together that can shape and sharpen a scope of work from this concept paper. Wells Fargo could have a new, long term customer base with such an investment. Government cooperation and support would be solicited from the start of a design protocol.

CareerACCESS for Young Adults Building Careers

CareerACCESS (see CareerACCESS.org) is one of the WID initiatives that could integrate with designs and testing of the app platform outlined above. CareerACCESS pilot projects will test changes in federal policy aimed at significantly increasing the employment rate of people with disabilities by expecting young adults with disabilities ages 18 through 30 to work. CareerACCESS will provide support and services recognizing that disability benefits are offsets to the high costs of disability rather than subsidies for the inability to work. By better managing the complexities young adults with disabilities face in retaining benefits while building careers, this app will enhance career goal setting for CareerACCESS pilot project participants or anyone using public disability benefits.

We Can Do This Today

There are federal, state and local agencies with a maze of programming to assist people with disabilities with the high costs associated with managing disability. These costs include health care, personal assistant services, medications, durable medical equipment, accessible housing, and wheelchair accessible transportation. Programs that can support these costs are trying to get into and harder to navigate once found eligible. Each program has strict and different eligibility rules as to how much income and assets participants may have at application and after award of the benefit.

Many programs have work incentive rules that can shelter income and assets to encourage participants to seek employment. Their current methods are also complex. Benefits specialists and lawyers are dedicating their careers to help participants get through the maze of processes, procedures, and regulations. National data on disability program beneficiaries reveals that most participants don't bother and decide it is easier and safer not to work.

Apps that foster expectations and make it easy to plan financially, manage current benefits systems and build careers are investments worthy of smart financial institutions.

My Resistance to Surgery

My Resistance to Surgery

Dr. Klest, thank you for seeing. Dr. Gerritz suggested surgery on my hips may enable me to sit upright without slipping thus reducing pain, discomfort, and sores I now get on my lower back. Knowing how busy surgeons are and since I have a significant speech impairment, here is a brief description of who I am and my resistance to surgery.

Born in 1952, I have significant disabilities due to Cerebral Palsy. Since starting grad school at U.C. Berkeley, I use a powered wheelchair. I've always had a speech impairment that has degraded in recent years. Before my spine began to compress in 2009, I performed all my activities of daily living (ADL) independently. I drove vans. I traveled alone throughout the U.S. for my Wells Fargo job, my advocacy work, and vacations. My wife, Denise, also has Cerebral Palsy. We live in our home. We adopted and raised a son since he was 3 months old in 1987. We only used personal assistant services for cooking, cleaning, and assistance with our baby. Now I use personal assistant services for feeding, dressing, transferring, transportation, etc.

My inability to sit upright has always been and continues to be problematic. As I child, I vividly remember my Mom yelling, “sit up straight.” During my high school and undergrad years, I propelled my manual by hooking my left arm over the wheelchair's handlebars and kicking backward. I drove powered wheelchairs by again hooking my left arm over the wheelchair's handlebars and steering with my right hand. In hindsight, my poor posture was probably a significant contributor to many of the physical problems I am now experiencing. However, given the freedom and independence I had, there are no regrets.

I've always been fortunate not to have pain. I don't deal with pain well. In 2011 doctors suggested cervical surgery to delay spinal compression. Denise and I researched the ramifications of that surgery. I decided against that procedure consciously choosing eventual paralysis and loss of functions over possible pain. I admit the paralysis came quicker than I anticipated with more discomfort than I expected. However, I continue to be extremely thankful for being drug-free and able to take advantage of my cognition. I am also very grateful for the assistance I receive from great attendants. With help from a very resourceful neighbor, we have been able to make incredible adaptations to my wheelchair that minimize my discomfort. I am amazed at how changes measured in fractions of inches or degrees can determine the difference between pain and no pain. All adaptations we fabricate are reversible, ensuring that I am always able to return to a known state.

I realize orthopedic surgery is not as dangerous as spinal surgery. However, knowing how sensitive to the pain I am, and knowing that no one is certain as to how my Cerebral Palsy really affects my sitting ability, and knowing that surgery is irreversible, leaves me very skeptical.

After 29 years of working at Wells Fargo, I retired as a Sr. Vice President to start a disability-focused employment company that specializes in consulting on staffing and placement issues. I quickly realized that there are systemic problems that intrinsically inhibit people with disabilities from working and being productive. Our society holds very low expectations for individuals with disabilities. Defining disability as the “inability to work”to receive disability benefits is an inherent disincentive. I am dedicating the rest of my retirement to see that these old policies are changed. I am doing so by working with The World Institute on Disability where I am leading an initiative called CareerACCESS. As of June 1st, I plan to contract with Wells Fargo part-time, assisting them in developing a Disability Financial Management App. I much rather focus on these tasks than working on recovering from surgery.

I promised Denise and my friends to keep an open mind when we meet. I'd appreciate knowing how many times you've performed the procedure on people my age with my degree of Cerebral Palsy. What were the goals and outcomes? What was the people's recovery experience? Would they do it again?
I look forward to your analysis and recommendations.

Community Independent Living Fund

Community Independent Living Fund

Since retiring from Wells Fargo, I've focused my time and energy to eliminate work disincentives in the current Social Security Disability Programs that inhibit people with disabilities from being employed. Given the current political environment, an entirely new approach may be required. Please read the following and give me feedback.

Currently, there are two separate Social Security trust funds, the Old-Age and Survivors Insurance (OASI) Trust Fund pays retirement and survivors benefits, and the Disability Insurance (DI) Trust Fund pays disability benefits. These funds are funded by employers and employees through payroll deductions. I suggest a third fund is needed.

The Community Independent Living Fund will fund personal assistant services, on-going therapies, durable medical equipment and maintenance drugs for workers with disabilities. This Fund will be used by any employee requiring these goods and services who cannot get the services covered by any other program.

By creating a separate funding source for independent living services, health care costs and healthcare insurance premiums should be significantly lowered. Expenses associated with pre-existing conditions should be defrayed by this Fund. Many Social Security Disability recipients stay on Social Security for fear of losing these critical services. By eliminating this fear, many people with disabilities will find employment. Social Security Disability will be able to return to its mission of providing a safety net for people with disabilities who truly cannot work. As more people receiving Supplemental Security Income (SSI), and Social Security Disability Insurance (SSDI) find employment, the costs of these expensive programs should decrease.

As with the two current Social Security trust funds, the Community Independent Living Fund will be funded by a payroll tax. This new payroll tax will be levied after an employee's annual salary exceeds the Social Security cap. Initial funding of the Community Independent Living Fund will be sought from philanthropy. While no one wants new taxes, it is surmised that people will recognize the value of this new fund.

Many details regarding the Community Independent Living Fund must be developed and negotiated. A thorough analysis of the Fund's effect on healthcare, Social Security, the debt and the overall economy must be carefully evaluated.

How can the concept of a Community Independent Living Fund be advanced?