Thursday, December 20, 2018

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 2nd 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 1st 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!

Friday, November 9, 2018

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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Friday, September 7, 2018

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 3rd 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.

Sunday, August 26, 2018

The Need for a New Business Model

Long-Term Medical Expenses
The Need for a New Business Model

Research is needed to discover and evaluate different business models for financing long-term medical expenses. These expenses, also known as independent living services, include personal assistant services, durable medical equipment, long term therapies, and maintenance drugs.

The federal government grants more than $100 million per year to academic and professional research centers to study issues that affect the population of people living with disabilities, primarily focused on policy-related issues There is an enormous amount of data and information about people living with disabilities, particularly related to demographics; barriers and facilitators to employment; the relationship between disability benefits policy, work and economic well-being; and the costs of living with a disability. Despite wonderful laws including Americans with Disability Act that have significantly improved the lives of people with disabilities, the economic well being of most people with disabilities continues to be dismal.

I'm thrilled that many agencies and an increasing number of financial institutions offer services that provide customers with disabilities and their support community with information, advice and guidance that aims to improve their financial health. Expanded use of ABLE accounts and Special Needs Trusts will positively impact the people with disabilities' economic conditions. I'm also thrilled that there is a renewed focus on job development and employment for people with disabilities. However, I do not expect that any of these efforts will significantly 'move the needle' re people with disabilities' financial health.

There is an underlying prevalent paradigm and business model that inhibits significant improvements in the financial health of people with disabilities from occurring. Too many agencies, including Social Security, still defines disability as an inability to work. Too often financing independent living services is only available to people living in poverty. These services must be viewed as investments and not just expenses. These goods and services must be viewed as enablers rather than just ways people with disabilities sustain themselves. Investment in technology that can enable remote assistance and robotic assistance must be viewed as ways of providing better goods and services as well as cutting costs. Provider's advancement should be tied to the advancement of their clients.

There should be many ways to achieve the goals stated above. One possibility may be an Independent Living Services Plan (ILSP) that is a cross between an insurance plan and a retirement plan. Premiums may be paid based on a percentage of a household's annual income. If/When long-term medical goods and services are needed, the ILSP would pay for the services and seek reimbursement to itself from the varied agencies that should be providing the service. Clients would be shielded from the myriad of complexities required to finance services they need. Client's co-pay may also be capped based on a percentage of a household's annual income.

My experience is that the business community is best able to develop innovative, sustainable, scalable and maintainable systems and business models that truly meets and exceeds the needs of its customers. How can we engage experienced business people, entrepreneurs and creative young people to suggest new ways of financing independent living services? What research is needed to prove the viability of any new strategies?

Thursday, June 14, 2018

We Are People with Disabilities

We Are People with Disabilities

Recently, an article in our Temple's monthly bulletin referred to people with disabilities as 'access-limited'. My wife, Denise, sent the following to the author early the morning after receiving the bulletin;

“I seem to be having one of my sleepless nights. One of the things disturbing my ability to fall asleep is that I find myself ruminating about the term in the subject line of this email that you used in your temple bulletin article. When I first read it, I couldn't put my finger on why it offended me, but in thinking about it in the wee hours of the morning realize how dismissive the term is in the context of how you used it. Referring to those of us who have disabilities as just 'access limited' only addresses the physicality of our experience; it doesn't acknowledge the exclusion we come up against as we experience the discrimination of being stereotyped, patronized, and ignored by members in our own Temple Sinai community. It doesn't help when leadership employs euphemistic terms to placate others' (or their own) discomfort; it really just allows everyone to keep their head in the sands and promotes "the suffering of being different" for all of us, instead of rejoicing in our diversity and the benefits of reaping what we all bring to the table.”

First, I want to acknowledge the importance of this topic. For anyone to lose a night's sleep, get out of bed and type a whole email should really tell us to pay attention and do something about it.

We are people with disabilities.

All my life, people have tried to come up with euphemisms for this. In recent years, the use of euphemisms has worsened. Some people do this out of fear of 'labeling us'. Some people do this hoping not to offend us. Many people use euphemisms in the hope of being more inclusive. No matter how well intentioned, euphemisms results in more exclusions and more isolation.

It's hard to imagine how identifying someone as 'differently-able' or 'access-limited' or 'challenged' would make that person feel part of a group or that the group would somehow feel more inclined to include that person. Using euphemisms can imply that disabilities are shameful or sinful. Using euphemisms not only reminds us that we are different, it tells us we don't belong anywhere.

There are some people with disabilities who may feel challenged by their disabilities. There are some people with disabilities who are differently able and perhaps even diverse able – though honestly I'm not sure what that means. Most people with disabilities have felt handicapped by their disabilities in various situations. Some people who may choose to closely identify ourselves politically and/or culturally with the disability community may be referred to as a disabled person, Among friends, we might refer to ourselves as crips or gimps (generally impaired). What is true for all of us is that we are people first and we have disabilities.

While this may answer the 'who are we' question, it doesn't address Denise's main issue re how to make Temple Sinai a truly welcoming and inclusive place for all people, including people with disabilities, Education is paramount. She and the Temple's Education Director just completed a wonderful Disability Awareness Course for post Bar/Bat Mitzvah students. The students toured our whole Temple and made a list of ways to make it more accessible for people with disabilities. Along with education, working together is how true camaraderie is achieved. People with disabilities need to be encouraged to actively participate in all aspects of Temple Life. Our Access Committee and Social Action Committee must take on more disability related issues. I'd love to see all our teens and young adults have the opportunity to work or intern, side by side with peers with disabilities, in civil service jobs including personal assistant services.

There's always so much more we can and must do to be the welcoming community we want to be. A critical step is recognizing and acknowledging who we are. For Denise and me, we are people with disabilities.

Tuesday, May 22, 2018

Becoming More Disabled

Becoming More Disabled

My becoming more disabled at the age of 59 was surprisingly difficult. 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 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 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 people with disabilities all over again.

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 may cause inconvenience for Denise and me, but it was workable. If an attendant was late it might have been aggravating, Now, if an attendant is dela,yed it could be dangerous to my health. I was able to schedule 1 or 2 checks to be sent weekly to my attendants. Needing attendants daily requires a complete payroll be run that includes paying taxes, workers comp, etc. I had to ensure every shift was covered and emergency attendants were available. Managing attendants is 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 do lobbying on the Hill. My attendant had worked for several years with some 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 onboarding 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. 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 and able to depend on others.

Go! Go! Go!

Monday, February 5, 2018

Meaning through Responsibility

Meaning through Responsibility
February, 2018

I'm reading a great book by Rabbi Jonathan Sacks called 'Not in God's Name; Confronting Religion and Violence', In the book, Rabbi Sacks describes how as we gain knowledge exponentially faster and faster, we seem to be losing our sense of meaning. As we understand how things work, we lose our understanding of why things work and why we are here.

This week's Torah portion is Mishpatim. This portion describes many laws that we must obey. These laws include things such as setting slaves free after 7 years to not farming ones land for a year every 7 years. While these laws may not be applicable to us today, I was reminded how important rules and regulations are to giving meaning and importance to our lives. Our Torah instructs us to do 613 mitzvahs in our life time. Tikkun Olam tells us we are here to repair the world and make it better. All of this tells us we are important, our family and friends need us, our community need us and the world needs us. These responsibilities gives meaning to our lives.

February is Jewish Disability Awareness Month. As most of you know, Denise and I are proud to be part of the Disability Community and active members of the Disability Movement since it began in the 1960's. Great Progress has been made. The world, especially in the United States, is much more accessible to people with disabilities. There are great laws protecting our rights. Educating children with disabilities is now guaranteed right. Employment discrimination is unlawful. Millions of dollars are spent annually trying to convince employers to hire people with disabilities. Despite all this, over 70% of people with disabilities are unemployed – the same percentage as when I grew up. Across the United States, 63 percent of students with disabilities graduated from high school in 2014 — a rate of graduation roughly 20 percent lower than the national average. Among jail inmates, 40% of whites and 55% of persons of two or more races reported having at least one disability, 

As I compared the civil rights laws having to do with people with disabilities with the laws in the Torah, I saw one striking difference. Whereas most civil rights laws talk about what society and the government should or should not do for people with disabilities, Torah laws talks about what people should or should not do for God and society. Currently, for example, there are laws that say that if people with disabilities cannot work they can receive support services they need to survive. These paid support services are not available for people with disabilities who work. My attendant services costs over $50,000 annually. Few young adults with disabilities can afford that and thus do not seek employment. What if we had a law saying that all people are expected to work to the greatest extent they can, and get support services they need to do so? Another example might be that current law says that children with disabilities should have an Individualized Education Plan and support services needed to complete the Plan. What if the law said that all children are expected to get the best education they can, and get support services they need to do so?

Next Friday evening, Temple Sinai's Access Committee is sponsoring a panel with Jessica Lehman, Executive Director of San Francisco Senior and Disability Action, Susan Henderson, Executive Director of Disability Rights Education and Defense Fund, and our own Rabbi Ruth Adar. They will be leading a discussion about broadening our social justice narrative to include disability rights. My hope is that in the near future, our social justice narrative may change to set high expectation that all people do their Tikkun Olam in a barrier-free environment with the tools and services they need.

Wednesday, January 3, 2018

Asking the Real Question

Asking the Real Question

“If I go to work, how much can I earn without losing my Social Security?” This is one of the most frequently asked questions received by disability benefits financial advisors. There are websites, online forums, law firms, and agencies devoted to answering this question.

Recently, as I stared at this question. I realized that this actually was not the real question most people with disabilities wanted to be answered. The real question is, “When I go to work, how will I be able to afford my disability-related expenses?”

Disability-related expenses, also known as long-term medical expenses, include things such as personal assistant services, durable medical equipment, maintenance drugs, and ongoing therapies. These are often the most important that keep people with disabilities alive, active, and engaged in our communities. These are also very expensive! Few people with significant disabilities can afford them even with 'good incomes.' The high cost of these long-term medical expenses is why healthcare insurers shy away from pre-existing conditions.

We have become so ingrained with the idea that Social Security is the gateway to financing disability-related expenses that we too often don't even look for other ways. The Veterans Administration, for example, pays disability-related expenses for veterans. In some states, the Department of Health pays for disability-related expenses for people with developmental disabilities regardless of income or assets. Private healthcare insurers often offer plans that cover disability-related expenses.

Unquestionably, Medicare/Medicaid are the most prominent financiers of disability-related expenses. Undeniably being a Social Security beneficiary is the easiest way to qualify for Medicare/Medicaid. Indeed before recently, I had dedicated my retirement to change the purpose of Social Security from being a wage replacement function to providing an offset to the high cost of disability. Changing the Social Security paradigm is extremely difficult, especially in today's environment. Expanding Medicare/Medicaid to cover long-term medical expenses is much easier to understand and to be accepted by the public and legislators. In a recent blog, Real Healthcare Reform, I explained how this expansion may be paid for and how I hope healthcare insurers may be our biggest advocates.

When we find ourselves asking the same question over and over again without getting an answer we can live with—perhaps we should ask ourselves whether that is the 'real question.' It may open new ways of looking at a problem and new opportunities to its resolution. Please let me know what you think about enabling Medicare/Medicaid to cover long-term medical expenses. How can/should we move forward?