Terumah – My Torah Commentary 02/14/2016

Terumah – My Torah Commentary 02/14/2016

“Let them make me a sanctuary so that I may dwell among them” comes from this week's Torah portion. It is also inscribed on the front of the ramp on Webster Street. The Torah portion goes into great detail as to how the tabernacle should be built. Indeed, one can wonder, how can anything be built so grandiose and beautiful so that God could and would want to live in it? If God is one and we are all part of God, what does it mean to build a sanctuary for all of us?

Clearly, Temple Sinai is beautiful! When we planned the new building, a great deal of thought went into trying to make it accessible to all people. The preschool area was designed for small children. The quiet room in the chapel was designed for children unable to sit through an entire service. There are no steps or pews in the chapel that prevent those of us who use wheelchairs from sitting wherever we like. We have prayer books in braille and we have hearing devices for people who are hard of hearing. We will soon have an adjustable height lectern in the Chapel that will enable some people to more easily lead services and chant from the Torah. Yet undoubtedly there are people who are not comfortable being in our community. I imagine people with intellectual disabilities may be very alienated attending services here. I know that people with environmental illnesses (EI) and Multiple Chemical Sensitivity (MCS) have difficulty being here especially when people come here wearing perfumes and colognes. People with print disabilities, including people with visual disabilities and people who have difficulty handling books and paper, do not feel very welcomed by our continued reliance on paper handouts.

However, knowing that it is impossible to ever build a sanctuary that everyone can dwell in is no excuse for not continually trying. Indeed that is one of the Jewish values I treasure the most – the idea that just because a goal may seem unattainable is no reason not to try to get as close as you can towards the goal. For me, this Jewish value can be summed up as 1) appreciate what you have, 2) be proud of what you've done, 3) know what your priorities are and 4) work as hard as you can to attain your goals even if they seem impossible.

February is Jewish Disability Awareness Month. This year, as I thought about disability awareness, I was struck by the overlap of the Jewish values I just described and the lessons disability teaches. As a person with a disability, I am very appreciative of all that I have, especially all the great people in my life without whom I literally wouldn't be here. I am proud of what I've done. I have a beautiful, wonderful family, home, friends and community. I'm even proud of having designed the 1^st 24 by 7 banking system in the U.S. for Wells Fargo. I've always been clear about my priorities. Currently, I'm focused on getting a program called CareerACCESS tested. Career ACCESS programs will be created by 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 required support and services recognizing that disability benefits are offsets to the high costs of disability rather than subsidies for the inability to work. I'm not sure I'll be able to change the entire Social Security disability program in my lifetime, but I am definitely trying!

Often, as I sit in our sanctuary, I am awed by its beauty. When I look at the ramp to the lower part of the bima, I am proud of what we did. As I look at the steps to the upper part of the bima, I am disappointed that we were not able to make that accessible, but I believe that some day someone will figure that out. As I look at the steps leading to the ark, I wonder what it will take to enable God accessible to all people and to truly have a world that we can all dwell in.

Please join us on February 23^rd for a mini film festival that will show 3 short films about different aspects related to disability. Please note that on February 24^th and 28^th, there will be a very exciting program for our religious school students which includes a recorded Skype interview with Judith Heumann, a longtime disability activist and presidential appointee currently working on disability issues worldwide for the U.S. State Department. Judy is one of the most acclaimed people with disabilities in the world who I have been friends with since I was in kindergarten.

For the last few months I have participated in a Temple Sinai task force that is looking at the Temple's mission statements and the need for a vision statement. As I prepared for the task force meeting Thursday evening, I wondered whether the quote inscribed on the ramp may be the basis of the vision statement. Imagine building a community where everyone is welcomed, included, needed and wanted!

Shabbat Shalom and Go! Go! Go!

Beshalach – My Torah Commentary 02/06/2017

Beshalach – My Torah Commentary 02/06/2017

      Our world is going through a major change. We are exiting the Industrial Age moving into the new era of the Information Age. We are moving from an age where many people worked in factories and well defined 9 to 5 jobs. We are moving to an age where robots are better able to do many jobs people do and where more and more people work independently. We are moving into a global economy. We are moving into a world where communicating with people half way around the world is often easier than communicating with ones next door neighbor.

      This week's Torah portion continues the Exodus story describing the long journey through the desert from slavery in the land of Egypt to freedom in the Promised Land. It describes how many of the people yearned to go back. Many pleaded their desire to return to a place they knew rather than a place unknown.

      There are many similarities with today's environment. In the last U.S. Presidential Campaign , a majority of voters on both sides voiced a strong desire for change. Voters made it very clear that being in the desert is difficult. Things needed to be changed. Unfortunately, both sides promoted their desire to go back instead of forward. Both sides advocated bringing factory work back. Both sides advocated solidifying old laws, processes and procedures that may not be applicable in the new era.

February is Jewish Disability Awareness Month. People with disabilities are also wandering the desert, exiting one era but not quite ready to enter the new era. In the old era much progress was made. Wonderful laws, such as the Americans with Disability Act, helped make the physical environment much more accessible. The Individuals with Disabilities Education Act helped guarantee that children with disabilities in the U.S. get an appropriate education. Even though the U.S. has not yet signed the United Nation's Convention on the Rights of Persons with Disabilities, it has more than 160 signatories globally. It is helping people with disabilities throughout the world engage with their communities. Yet in many ways people with disabilities are still slaves to their disability and to antiquated laws designed to take care of them. The unemployment rate of people with disabilities in U.S. remains over 75% - the same as it has been in the 1950's when I grew up and before any of the laws mentioned above were passed. Federal law still requires people with disabilities to prove they cannot work in order to receive services needed for survival.

      Today, programs such as Supplemental Security Income (S S I) are viewed primarily as safety nets. They protect people who supposedly are unable to work. In the new era, these programs will hopefully change to provide services enabling people to optimize their abilities. Today, we may encourage people with disabilities to do their best. In the new era, everyone will be expected to fully live their lives. The tools and services required to function optimally will be available to everyone. Today, medical equipment, personal assistant services, and other human support services are viewed as services that help for people with disabilities. In the new era, they will be viewed as enablers available to all people. Disability will be viewed as a diversity asset rather than a health issue. Personal assistants will be viewed as good jobs in a large job market. Special education will be the norm available to all children enabling them to reach their potential.

      Neither personal or societal transitions are ever easy. 5 years ago I went through a personal transition. I went from being a very independent person with a disability to a person who needs personal assistant services for almost all my activities of daily living. I used to be able to get out of bed whenever I wanted, eat when I wanted, drive a car when I wanted and do almost everything without assistance. Now I rely on attendants. I prided myself for knowing how to be a person with a disability. I was shocked at how difficult the transition was and continues to be. I was amazed at how difficult it was to rely on people for my everyday needs. I too yearned to go back. There is, however, no turning back. For me, my transitioning reinforced my understanding of how truly wonderful people are. People do amazing things when asked. I learned to ask for what I need. I also learned to value time and focus on things that are most important to me. Yes, transitions are difficult. They cannot be avoided.

      In this weeks Torah portion we read about how many Egyptian soldiers tried to pull the Jews back and how many Jews wanted to go back. We see that today. Many people want to go back and many people are trying to pull us back. What I find most exciting about Bashalach is that the Jews did not turn back. The Egyptian soldiers weren't able to bring us back. Similarly today, there can be no going back. Wandering the desert is, and will continue to be, difficult. We will get to our destination! It took the Jews 40 years to cross the desert. No one knows how long it will take us to cross our desert. There is one thing we do know. We must Go! Go! Go!

My February 9, 2019 Torah Portion Commentary

On Saturday, February 9, 2019, I presented this drash (commentary) at Temple Sinai.

Terumah

This week's Torah portion is Terumah. In Terumah God tells the people how God wants the Temple to be built. God gives very detailed instructions. Some tasks are to be done by everyone, and some are to be done by some people. Everyone had to participate.

February is Jewish Disability Awareness Month. Temple Sinai's Access Committee chose 'Care-giving and Care-receiving' as our theme—a challenge many congregants will need to address at some stage in their lives.

For me, transitioning to becoming more disabled at the age of 59 was surprisingly difficult. As most of you know, I have always had significant disabilities due to Cerebral Palsy. I use a powered wheelchair, My speech is hard to understand. I never sit upright in my chair. I always needed assistance in preparing food and cutting it up. My wife, Denise, has similar disabilities to mine. In the 35 years that we've been married, we've always needed attendants about 10 hours a week for cooking and cleaning. When David, our son, was a baby we hired help to help feed and bathe him.

At age 59, my spine started compressing causing me to lose sensation, strength as well as my ability to function independently. I now need assistance getting in and out of my wheelchair, in the bathroom, dressing, feeding, driving my car, etc. Many of my friends need this kind of assistance. As a disability advocate, I've always been a big proponent for good government-subsidized personal assistant services. Yet I wasn't ready for what real dependence on attendants meant. I couldn't get out of bed, or eat when I wanted to eat or go to the bathroom when I needed to. All of this was shocking to me. I felt that I had to learn how to be a person with disabilities all over again.

This week's Torah portion reminded me that we all need assistance. Even God needed help to build the Temple. Not only is it OK to ask for help, it is also required. The text clearly shows us that while God knew precisely what was needed, it was only through requesting assistance that God's needs could be met. Terumah goes on to show us how each one of us has unique skills. It is only when we all offer to use the skills we have to build a better world that true progress can be made.

Again, for me, needing personal assistant services for all my activities of daily living also meant higher expenses and much more management. Before, if an attendant needed time off, it might cause inconvenience for Denise and me, but it was workable. If an attendant was late it might have been irritating, but we managed. Now, if an attendant is delayed, it could be dangerous to my health. Before, I was able to schedule 1 or 2 checks to be sent weekly to my attendants. Now, needing attendants daily requires a complete payroll be run that includes paying taxes, workers comp, etc. I have to ensure every shift is covered and that emergency attendants are available. Managing attendants became a job in itself.

In July 2015, one of my attendants and I went to Washington DC to attend the National Council on Independent Living's conference and to lobby on the Hill. My attendant had worked for several years with many people with disabilities. She asked me why my attendants weren't paid through the Regional Center of the East Bay (RCEB). I knew of the RCEB, and I knew they paid for Supportive Living Services, including personal assistant services for people with developmental disabilities. I also knew that Cerebral Palsy is a developmental disability. It never dawned on me that there are no income or asset limits associated with these services. The application process took about nine months. After I became a client, Denise applied. We now receive personal assistant services 12 to 15 hours a day.

To receive personal assistant services from the Regional Centers, attendants must be employees of an authorized agency. We use Inclusive Community Resources (ICR) which is run and operated by a woman who has Cerebral Palsy. Denise and I still find and vet our attendants. I go with them to ICR to help with the ICR registration process, and I submit their time sheets.

Becoming more disabled showed me that while Social Security is essential, the more critical need is for proper affordable long-term medical expenses including personal assistant services, durable medical equipment, long-term therapies, and maintenance drugs. And becoming more disabled has reminded me of how wonderful people are. My attendants have shown me how even the most intimate personal care can be given with dignity and respect. To be truly independent, we have to know when and how to be able to depend on others.

Please join us at the Shabbat Mizmor Shir evening service on Friday, February 15^th when Helen Smiler presents a provocative introduction to the subject of giving and receiving personal assistance. This will be followed by a panel moderated by Rabbi Ruth Adar at the Oneg, featuring Sara Klein, Luciana Perez, and Denise Sherer Jacobson sharing their personal experiences. Also, please tell your family and friends that on Sunday, February 24^th at 10 am, the Access Committee will host a Conversation at Temple Sinai for the community to continue this very significant and purposeful discussion.

It is my sincere hope that going forward, we all know what we need and can ask for and receive whatever we require.

Shabbat Shalom and Go! Go! Go!

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Back at Wells Fargo

Back at Wells Fargo

I am thrilled to be back at Wells Fargo consulting with great people in the Innovation Group. We are developing a Disability Financial Management System. The advanced technology, the dedicated personnel, the financial advisors, and the marketing abilities that Wells Fargo offers are all very impressive and exciting to work with.

About a year ago, I pitched the idea to some friends at Wells Fargo. I had recently begun receiving funding from the California Regional Center for my personal care attendants. For decades, Denise and I spent many thousands of dollars annually for personal assistant services. It wasn't until one of my attendants ask me why I wasn't receiving services from the Regional Center did I realize that people with developmental disabilities can receive personal assistant services paid for regardless of income or assets. I have always been well connected with the Disability Community. If I didn't realize this benefit was available to me, imagine how unaware the general public must be of the many products and services that are available to them. I reasoned that only a big financial institution had the resources to implement a comprehensive Disability Finance Knowledge-Base and effectively disseminate disability-related financial information and advice to the public.

The Innovation Group spent the last 3 months interviewing team members and customers collecting their perspectives as to what their disability-related financial needs are and which Wells Fargo product and services can be enhanced to better meet these needs. These interviews confirmed that customers and prospective customers with disabilities and their support networks have unique needs that are not currently met by WF products and services. We heard that programs that provide financial assistance to offset the high cost of living with a disability can be challenging to navigate resulting in funds and resources not being received or maximized. Many people with disabilities do not work because of the fear of losing the benefits they need. We were told that accessing resources and financial support available while staying within guidelines to avoid interruption of benefits is confusing and time-consuming. Budget management on a “fixed income,” much less planning for the future for needed areas like estate planning is demanding, especially without tools and guidance. Many customers with disabilities and their support networks are unaware that WF can help them with financial management and financial planning. Customers are unaware that there are WF products that would be effective in specific financial stages, such as educational loans for special education, home loans for modifications, or assistive technology (equipment) loans.

For me, the most exciting thing about being back at Wells Fargo is realizing that combining artificial intelligence,(AI), a search engine, automation and human experiences, a genuinely comprehensive Disability Finance Knowledge-Base can be implemented and kept current. Combining AI, natural language processing, the knowledge-base and automation, a system can be developed to give people with disabilities and our support network the information and advice we need for financial success.,

Since I retired from Wells Fargo, they implemented wellsfargocommunity.com – a website where anyone can ask questions about any financial matters. There are discussion groups as well as a knowledge-base. A Disability Related Financial discussion group is being considered. The Disability Finance Knowledge-Base will also be added. Wells Fargo also implemented a Financial Health Call Center where community members are invited to call to get individualized advice from professional financial advisors. Wells Fargo is considering implementing a separate call queue where financial advisors specializing in disability-related financial matters can be reached.

I remain committed to seeing that Social Security change its archaic definition of disability as the inability to work. All people should have access to the products and services they need. It will take time and lots of advocacy to reach this goal. Meanwhile, it is exciting and uplifting to see how much modern technology and dedicated people can do to further people's financial success.

Please let me know if you have any questions. 

Go! Go! Go!

My Jewish Journey

I am a board member at Temple Sinai in Oakland, Ca. Every board meeting, one board member talks about their Jewish Journey. On December 19, 2018, here is what I presented.

My Jewish Journey

     Aside from my disability, being Jewish has been the most important aspect of my life that has shaped who I am. My parents are both Holocaust survivors. My Mom survived Auschwitz. My Dad dug his grave in the Lodz Ghetto and was scheduled to be shot the morning after the Russians liberated the ghetto. They came to the States in 1949 with my sister. Having a boy in 1952 with a severe disability was devastating to both of them. Due to the Holocaust, disability equated to death. They were determined that I be independent so that I survive.

      I learned at a very early age that how you view the world depends on whom you are. My father was the happiest, friendliest, easy-going guy I have yet to meet. His attitude was that if he could survive the war, he was going to be happy. If God exists, my father had paid his dues. My mother was very much the opposite. She cried every day. She prayed all the time, seeking God's help. She was also the strongest, most powerful person I know. Nothing would stand in her way or her family's way.

      When I was very little, my father took me to the Orthodox shul near our apartment in Coney Island. When my parents bought a home, we joined a conservative synagogue. The synagogue had an after-school religious program on the 2^nd floor in a house next door. Starting at the age of 9, the school bus would drop me off twice a week at the synagogue. My mom would meet me at the bus and help me walk upstairs. Since in public school I was in a segregated program for children with disabilities, this after-school program was really the only time I was with 'normal kids.' While I very much appreciated learning the stories, I never felt comfortable. Few of the teachers or students understood me when I spoke English, let alone Hebrew. My Mom would come back 2 hours later with my bike, help me down the stairs and walked as I pedaled home. I was not allowed to have a wheelchair until I went to high school.

      For the reading of the Torah portion, my Bar Mitzvah I had to stand, or actually hang on my father's arms as he held me up. I remember deliberately mispronouncing a word. I wanted to see whether the Rabbi understood anything I was saying. I looked up to see him just smile. I had a huge party in a banquet hall complete with a band, a photographer, flowers, etc. Before the candle lighting ceremony, all the lights in the banquet hall were turned off. My father helped me to a stool near the cake. When I was securely sitting on the stool, the lights went on, and the ceremony proceeded. Afterward, all the lights in the banquet hall were turned off again. My father helped me back to my seat, and the lights went back on.

      Throughout high school and undergrad college, I always identified as being Jewish. At Hofstra, I went to a few Jewish parties and a few holiday services. It wasn't until I came to U.C. Berkeley and attended Shabbat Services regularly at Hillel did I realize how wonderful religion, especially Judaism, really is. Rabbi Ballanoff made me see how the people who wrote the Torah created stories that help people know how to live in this world. My roommate at the time was Ched Myers who has since become one of the greatest Christian Theologians of our times. He and I spent an endless number of hours discussing how bible stories and their commentaries provide a framework for people to live by. From these discussions, I realized that what differentiates Judaisms from other religions is the basic tenant that we are all here to make the world 'better.' We don't always get it right and too often get it wrong. Regardless of race, sex, disability, class, nationality, affiliation, religion, etc., we are all trying to help the world evolve. I also greatly appreciate that in Judaism questions are more important than answers.

      When we were trying to adopt David, his biological mother was more apprehensive about Denise and I being Jewish than about us having Cerebral Palsy. Her priest reassured her that it would be OK. When David came home, I excitingly called Rabbi Balanoff and asked him to do a baby naming. He reminded me that since the biological mother wasn't Jewish, David would need to wait until he was 13 before deciding to convert. The conversion would include having another circumcision. While I knew that I wouldn't be performing the circumcision, there was something too dogmatic about this. We decided to look for a reform Temple.

      We were very lucky to find Rabbi Waldenberg and Temple Isaiah. The congregation was warm and welcoming. A make-shift ramp to the bima was built, and a beautiful baby naming ceremony was held. Denise and I became somewhat involved with the Temple, especially when David was old enough to go to their toddlers' program. One of the biggest honors we received was being invited to the Rabbi's home for a Passover Seder. Upon our arrival, we met 2 women who were hired to help prepare the Seder. I remember thinking that here the 2 women symbolized class. Had those same women done the same work at our house, they would be considered caregivers or attendants. I learned again how important perspective is to the disability experience.

      Rabbi Waldenberg retired. The new Rabbi and I were not able to communicate too well. The religious school had some difficulties integrating David. Driving through the tunnel and up and down the narrow winding driveway to Temple Isaiah got hard for me. In 1994, we moved to Temple Sinai and have been active members ever since. Denise started the Access Committee. I served as the 1^st Access Committee's representative to the Board before getting my at-large seat. Denise had her Bat Mitzvah here. David had his Bar Mitzvah here. We all went to Israel in 2005 with a group from Temple Sinai. Denise and I have served on many Temple Sinai committees and task forces including several Rabbi Search committees and the Strategic Visioning Task Force. We have also represented Temple Sinai at URJ conferences and at the Hebrew Union College in New York. We like to think that we belong here!

      As we move forward in these tumultuous times, the need for clergy and religious lay leaders to help us remember our civility and morality has never been greater. I look forward to working with the Temple Sinai Community towards this end.

Go! Go! Go!

The Gig Economy

The Gig Economy

There are 7 million open jobs in America today. And yes, millions of working age people with disabilities are not getting jobs. Why? Because low expectations and prejudice are holding too many of us back. We who have disabilities know what we can do. We can and must succeed. It is imperative that people with disabilities join the gig economy now. It is also time for agencies whose mission is to improve the financial health of people with disabilities to focus on the gig economy as well.

The U.S. is moving swiftly into the gig economy. More and more people find themselves working independently. Companies such as UBER and Lyft are quickly replacing taxi companies with independent drivers using their own cars. Upwork is an online marketplace to find all kinds of independent workers. Ebay and Amazon make it easy for small businesses and independent workers to sell their wares online. It is imperative that people with disabilities join the gig economy now.

In the gig economy every independent worker must learn how not to feel isolated. Often finding themselves alone in front of a computer or smartphones they must learn to find mentors to help guide them. They must create their own daily structures. With no training or experience, they are expected to do things such as pay taxes, save for retirement, pay for healthcare, save for sick days and vacation days. People with disabilities must also learn how working independently will affect their ability to pay for long-term medical expenses including personal assistant services, durable medical equipment, long term therapies, and maintenance drugs. Perhaps most importantly, independent workers must learn how to effectively market their products and services. Teaching all these skills should be the focus of agencies wanting to improve employment opportunities for people with disabilities.

The gig economy also encourages the creation of small businesses. Undoubtedly, along with being able to be good independent workers, there are people with disabilities who can and should be entrepreneurs. Agencies should be incubating and promoting Disabled Owned Business Enterprises (DOBEs). They should be assisting entrepreneurs with disabilities find capital, find board members and mentors, setup and organize, and market the business's products and services. Ideally the agency that helps capitalize and/or guides the DOBE will be partially funded by the DOBE.

The type of businesses that could be DOBEs is endless. Each of the skills listed above could be its own business. Imagine, for example, a business that does taxes for independent workers, or a business that help independent workers save. Imagine a business that provide healthcare or personal assistant services for independent workers. Many of the functions now done by agencies promoting employment for people with disabilities might be done even more effectively by DOBEs. The time might have arrived to move beyond making employers aware of skills people with disabilities have and having DOBEs run talent agencies providing employers with the skills they need.

I am very interested in promoting Disabled Owned Business Enterprise. Please let me know you if you know any businesses that are 51% or more owned by a person with a disability or a veteran. I want to make sure they are certified (see DOBE Certification). I also want to add them to the DOBE page on the Abilicorp website.

It is always frightening when a change as huge as the gig economy occurs. However, change often brings new and exciting opportunities. For many people with disabilities the gig economy will provide the chance to work when, where and how we can and want to work. It will challenge us to be creative, innovative and resourceful. Success will totally be ours to aim for and attain.

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Independent Living Services Plan

Some people who read The Need for a New Business Model asked me to explain how an Independent Living Services Plan (ILSP) might work. Please review the following and give me feedback.

Independent Living Services Plan

How It Might Work

An insurance firm offers an Independent Living Services Plan for a reasonable monthly premium. If and when a customer needs long-term medical expenses including personal assistant services, durable medical equipment, long term therapies, and maintenance drugs, the insurance firm assigns a case worker. The case worker and the customer and other relevant people will determine what long-term medical expenses are needed and for how long. This road-map will identify government and non-government agencies that will pay for each expense. The road-map will also lay out the processes and procedures required to obtain and maintain funding for these expenses. The road-map will be periodically reviewed and updated. Any expense that cannot be covered by a 3^rd party will be covered by the Independent Living Services Plan and the customer based on a sharing formula identified in the Plan.

Research needs to be done to determine the costs and benefits of offering this kind of insurance. What systems can and should be built to enable people to build and maintain an Independent Living Services road-map? What training would an ILSP caseworker need? What business model for providing personal assistant services should be implemented? Should this kind of insurance be combined with the more traditional long term disability insurance that caps services provided? How can Remote Assistance Services and robots improve the business case? Can the business case be improved if/when insurance companies persuade Medicare/Medicaid to modernize their rules and regulations regarding long-term medical expenses reimbursements? What might be a reasonable monthly premium that will make this a viable idea? Can/should premiums and sharing formulas be based as a percentage of household incomes? These are the sort of questions financial institutions in conjunction with the disability community should be evaluating.

This is just one scenario. Other scenarios should be proposed and evaluated. How can we obtain risk management and accrual services to project the costs and benefits of these scenarios? What other research is needed to prove the viability of any new strategies? Please share this with people who may be interested. Please let me know if you have any questions.