Abilicorp – Personal Assistant Services(ABPAS)

 What is ABPAS?

Background

In 2010, my spine began to compress, resulting in my inability to function independently and significantly increased reliance on personal assistant services. In On Becoming More Disabled, I described the shock of the change, my appreciation of the work PCAs perform, and the luck I have living in California, where people with developmental disabilities receive the assistance they need regardless of their income or assets.

Personal care assistants (PCAs) differ from caregivers in the same way the independent living model differs from the medical model. The medical model helps patients’ get better,’ feel better, be comfortable, etc. The independent living model enables consumers to do what they want and live their lives their way. It is a very different mindset. 

PCAs often perform extremely personal care tasks for minimum wages, no fringe benefits, little or no training, and a wide range of work environments. They see us at our best and worst. Their reliability, punctuality, and understanding of non-verbal cues are often critical to survival. Medical team members, including caregivers, usually only see us when we are ill or in a strange, confining, and alienating environment.

 I am starting Abilicorp Foundation as a low-profit L3C corporation whose mission will initiate and promote Disabled Owned Businesses. Its 1st project is developing and implementing the Abilicorp – Personal Assistant Services(ABPAS) in the Berkeley/Oakland area, with plans to roll out its new model to many communities.

Our Mission

ABPAS’ mission is to establish a personal care assistant((PCA) referral and management agency that will enable people with disabilities and elders to have complete control in managing their assistance needs. ABPAS will also assist PCAs in achieving their work and financial goals. ​  

Our Unique Approach

ABPAS is the latest community-driven agency to actualize the independent living model. The IL model affirms that consumers (people with disabilities, elders, and their families) are the experts on their own needs and can live the lives they want when they have the support they need.

ABPAS realizes this ideology by giving consumers as much control as they want over their PCA search, hiring, and management processes while providing PCAs with living wages, healthcare options, training opportunities, and support. While other agencies charge high overhead fees for middle management services,

ABPAS offers ways that consumers can manage the PCA management process. They can

• Use the website tool for free and independently handle all aspects of PCA management  
• Work with an ABPAS independent facilitator to recruit and vet PCAs
• Consumers work with an independent facilitator to manage all aspects of PCA management  
• Engage ABPAS as the legal employer of PCAs, responsible for payroll, tax filings, liability, etc., giving consumers as many or as few day-to-day management responsibilities as they want. 

ABPAS will also offer the infrastructure for support circles. These localized networks of consumers, PCAs, and independence facilitators share work schedules, rotate PCAs, and respond to an emergency or varying needs. Support circles allow PCAs and consumers greater flexibility, knowing there is a diversified support network that can adapt in the face of emergencies or changes in schedule. 

ABPAS will assist PCAs in achieving their work and financial goals may. This assistance may include financial counseling, advocating with funding sources,  and referrals to multiple consumers. ABPAS will also encourage PCAs to be independent living facilitators or work at local businesses and agencies to augment their wages.

Holding equity at its core, ABPAS will work with government agencies and healthcare plans to help ensure that people with disabilities and elders receive the assistance they need regardless of income and assets and that PCAs receive livable wages and benefits. 

We will work with consumers and their support circles to recruit PCAs from colleges, universities, medical schools, community groups, religious institutions, and social media. We envision interwoven

We are looking forward to this new venture!

Legalizing Assisted Dying

It is terrifying seeing the number of states legalizing aid for dying. These laws will lead to abuse and a dangerous slippery slope. They may entice doctors not to suggest treatment; legislators may be inclined not to fund medical treatments and research, people with disabilities may be incentives to give up, etc. Legalizing aid for people who are dying is one of the only legal domains in that the law should differ from societal beliefs even if a supermajority holds those beliefs.

Assisting people to die has always been happening and will continue indefinitely. However, no one can accurately predict the future, how people may feel, or know why we are alive. In many cases, assistance is given with the best intentions to relieve the patient, their family, and friends of great pains and suffering. Quite often, these actions are requested, well-planned, and welcomed. In these instances, people do not need the law to permit them to die; they may need trusted individuals who know them well enough to assist them.

Laws should not rob people of hope. We have witnessed how scientific, medical, and technological advances have made the impossible possible. We have seen how changes in environmental, societal, or personal circumstances change one's perspectives.

Anyone who knows me knows my wonderful life and how much I treasure it. Five years before I was born, my mother gave birth to a baby boy who, like me, had his umbilical cord wrapped around his neck, preventing his ability to breathe. Unlike my birth, the doctor convinced my parents to let the baby die. Although I sincerely believe that the doctor and my parents made the compassionate decision at my older brother's birth, the thought that the law would condone it terrifies me.

My father taught me that people who believe they know their purpose for being alive will find a way to die when they fulfill that purpose. The mid-1960s were when people throughout the country were protesting against the Vietnam War, demanding civil rights for marginalized minority groups. The sense that everyone wanted to make the world better. One evening, around the dinner table, I asked my father what his purpose in this life was. I expected some socially-minded answer that had to do with him being a Holocaust survivor. Instead, he told me his goal was to see his three children grow up, move out of his house, and be OK. In 1979, after my sister, brother, and I lived on our own, he had a heart attack, drove himself to the hospital, and died. Every day, I dearly miss him. I am, however, comforted knowing that he lived and passed away his way. Again, I can't imagine a law condoning someone helping my father die. We should be encouraging people.to focus on what is important and what assistance they need to achieve what they want.

When my spine began to compress, my doctor asked me how I would feel if I needed a feeding tube. At first, I thought it was a strange question until I realized he was asking me about end-of-life. I told him I was ready to go when I could no longer argue. He knew that arguing means communicating, and there are many ways to communicate, including with one's eyes or head movements. I know many people who cannot share their thoughts and live good lives. My wishes are unique to me. All directives and laws are open to interpretation. It is frightening imagining a stranger interpreting my head movement as my readiness to die.

I know that there are few abuse reports in states and countries with right-to-die laws. Since death ends one's future life, how can abuse be known?

Living the way we want and dying the way we choose is idyllic. I hope we all have the wisdom to know the real purpose of our lives and when it is time to leave. I hope we all have a confidant who knows us exceptionally well and can provide the assistance we need when we are ready to die. Knowing that the confidant may face the wrath of family, friends, and the law further ensures the deliberateness of the decision. The dangerous slippery slope created by laws permitting assistance in dying outweighs any benefits those laws may offer. 

The Role of Religious Institutions - Vayigash - December 2015

 Before the last Board meeting, Sara, our Board President, asked us to read Something More and How We Gather. These papers describe how millennials create and find community outside religious institutions. As I read them, I got increasingly happy and excited that young people are developing innovative ways of being, working, and playing together. The more I read, the more I thought that these are kinds of activities religion should be cultivating, especially reform Judaism; I've always considered religion as the institution that helps people see awe, find purpose and promote their passions. 

 

Each of the committees Temple Sinai has, and every program we run, are similar to the programs millennials have started. The Access Committee, the Green Committee, Brotherhood, and WTS are all examples of people seeking community to accomplish something meaningful. The 'Conversations' we're having this year can and should be considered another Temple Sinai Committee – one that engages the community in meaningful dialogues. They all begin when clergy, staff, and/or congregant(s) have a passion for doing something and need/want support from the community.  

 

Temple Sinai, and other reform synagogues, should be institutions that enable members to follow their dreams with Jewish values, tradition, and history. These dreams may be cultural, spiritual, social, and/or entrepreneurial. Jewish wisdom is what can help ensure dreams are realized. I suggest the goals of our strategic visioning task force should be to propose a new Temple Sinai tag line, a new Temple Sinai mission statement, and a framework for starting, running, and retiring programs, committees, task forces, and businesses.  

 

I look forward to discussing this with the Strategic Visioning Task Force team. 

 

The Need to be Needed -- JDAM -- February 2011

                                                               The Need to be Needed 

Imagine that one of the missions of our religious school is ‘to teach all students how they can have a unique and significant role in Tikkun Olam and their community.' 

 

Both my wife, Denise, and I have significant Cerebral Palsy, a disability that causes us to have slurred speech,  use powered wheelchairs to get around, and necessitates that we do activities of daily living in creative ways. The time I felt the most accepted was when our son, David, was a baby. Since Denise took care of him all day while I worked, I had night duty. When David woke up hungry at 2am, he didn’t ask if I was able to get up and warm a bottle for him. He didn’t ask if I was too tired. He didn’t ask how I was going to do it. He made no assumptions as to what I could or could not do. He cried and demanded his bottle. I was thrilled. I was needed! 

 

I greatly appreciate and applaud the Jewish community's commitment to finding different ways for children with disabilities to learn in the same Jewish Education program as their peers. But Jewish Education is more than reading Hebrew and studying Torah; we, in the Jewish community, have a great opportunity beyond traditional academics. Can we teach all students how their uniqueness is needed by our Temple communities? Can we direct more energy and creativity to develop new and meaningful activities and jobs that can be performed by people who have different kinds of skills? Aren’t mitzvot such as providing companionship for elders, watching young children, and preparing for Onegs as important as reading Torah? 

 

By teaching our ‘special-needs’ children how they can perform Tikkun Olam in their unique way, we will also be teaching them, as well as our community, that they are, indeed, just as ‘special’ as all children. 

High Expectations -- December 2013

  

High Expectations - Torah Reflections - Dec.2013 

Parsha Shemos 

 

Tomorrow is my birthday. To my surprise, this week's Torah portion is not about Joseph, which is usually the portion I write about. This week's Torah portion is Shemos, the beginning of the book of Exodus. In Shemos, we learn that a new pharaoh, who didn't know Joseph, enslaves the Jews and orders all first-born Jewish boys to be killed. We learn how Moses, a first-born son, survives this horrendous decree by being placed in a basket, floated downstream, discovered by one of Pharaoh's daughters and raised in Pharaoh's house. Since the movie The Ten Commandments retells the story much better than I can, I urge you to see the movie for further details. I do, however, want you to know that Shemos contains my favorite part of the Torah. It is where G-d tells Moses to lead the Jews out of bondage. Here's why I like it. 

 

As you may remember, after 29 years of working for Wells Fargo, I retired 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. Our government's defining of disability as the 'inability to work' in order to receive disability benefits is an inherent disincentive. The continual pleading with employers to hire people with disabilities who usually have less work experience than their peers portrays us as needy individuals. The ever-present view that people with disabilities always need something while ignoring the basic need to be needed inevitably leads to poor self-esteem. These currently accepted mores and practices must change! 

 

I worked with the World Institute on Disability this year, developing the CareerACCESS Program. This program 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 cost of disability rather than subsidies for the inability to work. We recently learned that a Senator has spoken to the Social Security Administration about including appropriations in the 2015 budget for a feasibility study of the CareerACCESS Program. 

 

We want The Union for Reform Judaism – Religious Action Center as an active supporter of the CareerACCESS Program.  This week's Torah portion clearly describes the need and appropriateness of such a program. G-d picked Moses to lead The Jews out of bondage. When Moses tried to argue that his speech disability might inhibit his ability to fulfill the task, G-d rejected Moses' request to quit. G-d expected, in fact, demanded that Moses do the job. Furthermore, G-d gave Moses the tools Moses needed for the job. G-d gave Moses a rod that turned into a snake to show Pharaoh that Moses was indeed representing G-d. G-d also told Moses that his brother Aaron's unimpaired ability to speak could be used as a communication assistant. This combination of having high expectations combined with providing necessary tools is a great way of motivating people. It tells people they are needed, that they are expected to do well and that with the right tools and support, there's always a way to succeed. 

 

 

Mishpatim -- February 2021

 Mishpatim - My Torah Portion Commentary -- February 13, 2021 

 

This week’s Torah portion contains rules regarding the treatment of slaves and mistresses. I struggled to understand what lessons our ancestors were trying to teach. Even though the Torah reflects the era’s norms, it is upsetting that the Torah condones slavery and men owning human beings. I compared these rules to the ten commandments. Thankfully, the laws in Mishpatim are no longer relevant, but the ones in the ten commandments are still meaningful. I suggest the reason for this is that the ten commandments apply to everyone. 

 

Under the Trump administration, we saw how quickly and easily laws that affect groups are created and overturned. Laws that affect everyone may be more challenging to develop and implement but are less likely to be overturned. 

 

February is Jewish Disability Awareness Month. Throughout the nation, presentations are being given that speak to the needs of people with disabilities. As a life-long disability advocate, I am proud of the progress the Disability Movement has made. Laws such as the ADA made the country much more accessible. Reasonable accommodations for disabled employees are mandated. Children with disabilities go to integrated schools. They have Individual Education Plans that try to guarantee they have the resources needed to succeed. There are fewer people with disabilities confined to institutions. 

 

Despite this progress, the percentage of employed disabled people remains the same as in the 1960s. Too many people with disabilities are homeless. The number of children with disabilities that do not finish high school remains alarmingly high. Prisons have replaced institutions where people with mental health disabilities get the help they need. Recent history showed us that laws aimed to help people in a marginalized class do not change society’s attitudes. We saw how quickly and easily these hard-fought civil rights advances could be lost.  

 

Instead of focusing on people with disabilities’ needs, let’s focus on how these needs apply to all of us. Shouldn’t we all have access to public places? Don’t we all need resources to live in the communities we choose? I never met a child who wasn’t ‘special’ and couldn’t benefit from an individual education plan. Why don’t all employees deserve reasonable accommodations? As long as our desires do not harm others, shouldn’t we all be able to live our lives to the best of our abilities with the resources we need? Although I don’t know of any cost-benefit analysis, I surmise that laws that affect everyone are more cost-efficient than those that affect sub-groups. 

 

Reading this week’s Torah portion reminded me that laws do not change attitudes or the caste system. While we may feel good that rules about treating slaves and mistresses may not be as applicable as they were in biblical times, the last few years clearly showed us how rampant sexism, ableism, anti-Semitism, and caste systems are.  

 

There are caste systems within caste groups. For example, within the disability cohorts, people who look ‘normal’ are higher up the chain than people that look and or sound different. People with Cerebral Palsy, like me, tend to be near the bottom. This hierarchy became clear to me the summer I spent at the rehabilitation center before my bar mitzvah. Each morning I heard nurses pick straws. The nurse who picked the shortest straw had to ‘feed the CP.’ Occasionally, when I went to the bathroom, a guy with paraplegia would come in, pick me up from the toilet bowl, throw me on the floor, and tell me that ‘throne’ was not for ‘CP.’ Years later, when I told my mother that Denise and I were engaged, she cried, wanting to know why I didn’t find a ‘nice Polio girl.’ 

 

During Jewish Disability Awareness Month, congregations listen to sermons and presentations about the importance of including people with disabilities in all aspects of life. In the last few years, I watched movements such as Black Lives Matter and the Me-Too grow. I saw audiences give standing ovations after viewing Crip Camp. While all these movements and events hope to change the general public’s attitudes, their actual impact is awakening and empowering their cohorts. It was invigorating seeing people who are Black, Brown, LBGTA, Disabled, Muslims, Jews, Latinos, victims of sexual abuse, and many other marginalized groups loudly and proudly proclaiming who they are and what we all need.  

 

Even if laws do not change society’s attitudes, it is critically important that we continue advocating for rules and regulations that change behavior in the most civilized way. This year my advocacy will focus on seeing that healthcare-for-all includes long-term community-based support services for all, regardless of income or assets. Until everyone can obtain affordable, accessible healthcare and the products and services they need to live the life they want, we won’t change our culture’s sexism, racism, classism, ableism, xenophobia, homophobia, etc. 

 

This week’s Torah portion shows us the importance of rules guiding people to practice their cultural values humanely. As we recover from the pandemic and leave the Trump era, we have a unique opportunity to create a ‘new normal' that reflects our values humanely. The general public’s attitudes may not change, but we can achieve our goals if we feel good about ourselves, realize what we all need, work together, and Go! Go! Go!