Neil's Inspiration Matters Interview

[Nupur Chokshi is the founder and author of Inspiration Matters. It's a collection of stories and interviews of people with disabilities aimed at showing the wide range of experiences, beliefs, and hopes that exist in our community. I dislike the name of the website and don't believe that the stories or the people interviewed should be considered inspirational. I do, however, think it's a great idea for people, especially young people with disabilities, to have a central place to find these stories. Here is my interview with Nupur that was completed in October, 2019.]

1 What key area do you address to promote economic development for people with disabilities?

NJ. The critical area that I focus on when promoting economic development for people with disabilities is to ensure that every person with a disability has the skills, resources, and the self-belief that they need to be the best person for the job they want. Throughout my life, the emphasis that most people take when they promote employment for people with disabilities is to persuade employers to 'hire the disabled.' My experience is that many, if not most employers, are more ready to hire people with disabilities than we are to go to work. Many people with disabilities in the United States do not work because they fear losing services, such as personal assistant services. These services are usually paid by the government but only for people who don't work and have little assets. Too many of us have bought into society's low expectations of us. We need to feel good about who we are. If we don't, no one else will.

2 What are the barriers to inclusiveness? Who can address those barriers, and how?

NJ The most significant barriers to inclusiveness are the low expectations that people have of us and that we have of ourselves. We allow challenges to become barriers. We shy away from challenges. Too often, when we hit a brick wall, we give up instead of finding a way around the wall. There is always a way!

3 What life decisions have helped you to reach where you are today?

NJ, I have always had a plan with measurable goals and milestones. I have not always met my goals and milestones, and my plans have often changed. I found, however, that it's easier to get somewhere when you know where you want to go as long as you are willing to change directions. I have also always had mentors – people who know how to kick my rear-end and push me to do my best. I also take calculated risks. Perhaps the 2 most significant life decisions I've made was moving to California after college and adopting a baby with my wife, Denise.

4 Who is your inspiration?

NJ Judy Heumann. I was lucky to be in the same class with Judy when I was in kindergarten. We have been close friends ever since then. She still has more energy than anyone else I know. She also has the clearest vision of where the Disability Movement needs to go.

5 What are your other hobbies?

NJ My favorite hobby is having a mocha with friends and discussing politics and religion. I enjoy listening to e-books and seeing movies and plays. I play backgammon and chess.

6 What is your favorite place to visit? What do you love about that place?

NJ Yosemite National Park is my favorite place on earth. I love staring at the enormous mountains like El Capitan. I imagine the mountains saying to me, “Ha! You worry about day to day trivia. We've been here for millions of years! Look around and behold the beauty that's all around.”

7 What is your suggestion for families of children with disabilities to empower their children?

NJ – The 2 suggestions I have for parents of children with disabilities are to follow your heart and have fun! We live in an era where we are bombarded with advice. If you follow your heart, you will not always be right, but you won't be wrong. I've written about how my parents refused to let me have a wheelchair until I went to high school. I wouldn't do that, but I learned to work hard, and that failing is OK. Having fun is critical for a couple and their family. Too often have I seen families get so involved with a disability that they forget that life needs to be filled with fun.

8 What tips/advice do you have for those in our community who want to overcome adversity?

NJ My advice re overcoming adversity is that don't shy away from it. Find your community and support each other. Try not to blame others for the challenges we face. Blaming others too often diminishes our power to do something about it. Try to discover the real underlying reason why roadblocks are erected and be creative as to how to remove barriers.

9 Any special message for our community?

NJ The main message to the disability community is to enjoy life. Sure there are real problems to solve, barriers to tear down, attitudes to change, etc. It's much easier to accomplish these things when we feel good about who we are. Find your mentors. Find and actively participate in your community. Revel with family and friends. Most importantly, have fun and Go! Go! Go!

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Self Determination Program

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Self Determination Program

September 2019

In previous blogs, I explained how the California Regional Center System provides long-term medical expenses including personal assistant services, durable medical equipment, long term therapies, and maintenance drugs to people with developmental disabilities regardless of their income or assets. Now the Regional Center System is implementing a Self Determination Program (SDP). This program should be the model for providing Independent Living Services to all people with disabilities in all states!

The Self Determination Program will enable participants to have control of their annual Independent Living Services budget and manage their own personal assistant services, as well as their educational, vocational, and community involvement plans. Participants are required to use a Financial Management Service (FMS) to perform financial matters. The FMS may be used just to pay bills, or be a co-employer with the SDP participant, or be the employer-of-record for the SDP participant's staff. The SDP participant is required to create and maintain an annual Person-Centered Plan (PCP) where they outline their goals and objectives and explain how their budget will be used to achieve their plans. Participants may hire independent facilitators to help them prepare and follow through with their projects and budgets. Participant's Regional Center's caseworker will review plans and budget to help to ensure they meet labor laws, SDP guidelines and that nothing has been omitted.

Currently, Denise and I get our personal assistant services through Thrive Support Services. They have been great to work with. They enable us to find, train, and manage our own attendants. We have created our own Self Determination Program. It will be useful to have full control of our budget and our attendants' schedule and not be constrained by some of the rules a Supportive Living Services Provider must enforce. For example, our attendants must clock in and out from within our house. I am hoping Thrive Support Services will be our Financial Management Services Provider when SDP starts.

To date, the Regional Center of the East Bay (RCEB) has focused mainly on preparing participants on how to create PCPs. More emphasis is needed on the financial and liability aspects. Participants that use personal assistant services need to have guidelines regarding wages, fringe benefits, training, time off, emergency services, insurance, etc.

Currently, many people with disabilities are unemployed and live in poverty as a way of qualifying to receive healthcare and long-term medical expenses they need to survive. Given that the government is already paying these expenses, it is hypothesized that rolling out a Self Determination Program to everyone that needs it may not incur more costs. If more people with disabilities become employed, the taxes they pay may result in overall cost-savings. Providing the Self Determination Program to people with mental health disabilities may be one way of combating the homelessness crisis many cities are facing, especially if independent facilitators and personal assistants are available and well trained.

I have a great deal of hope that the Self Determination Program is the next major accomplishment for the Disability Movement. Let me know what you think. How can we promote this program?

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Hate, Diversity, and Assimilation

Neil's Challenges not Barriers Blogs

Hate, Diversity, and Assimilation

August 2019

As of 08/04/2019, there have been 250 mass killings in this country this year! Now, more than ever before, we need leaders who unite us. I urge everyone, especially our President, to stop all the divisive rhetoric. While it is true that the shooters are the ones to be blamed and that they may be 'sick,' there can be no excuse for people who embolden them and flame their violence. Unless a group purposely aims to harm another group, no one should ever fear or hate others because of their sex, race, nationality, religion, sexual orientation, disability, economic class, or political association.

History has shown that when people feel financial and/or socially threatened, they seek a strong leader and a common enemy. Our President has shown us how thoroughly frightened many people are today. People are frightened by the jobs they have lost or the lives they may soon need to change. These economic and social shifts are due to advances in technology and globalization. Instead of focusing on the positive side of how these advances can help everyone, both sides of the political spectrum are instilling fear and hatred. Instead of finding ways of using new technology to ensure that everyone has good food, health, and happiness, we focus on how new technology is taking away our jobs and privacy. Instead of seeing how globalization can supplement and complement our cultures, we choose to blame each other for the atrocities of the past.

 
Focusing on diversity and neglecting assimilation has led to a very ugly and dangerous tribal polarization in this country. It is critically essential that people in all ethnic, racial, national, and other cultures learn about their heritage and feel good about their group and good about who they are. It is equally essential that all people learn how to assimilate into the mainstream culture. Accusing 'the other group' of the horrors, pain and discriminating acts they and their ancestors have afflicted on 'our group,' regardless of the validity of the accusation, rarely lead to real change. Working and playing and focusing on how changes will help everyone is how actual progress happens.

I have an obvious and palpable disability. I use a powered wheelchair for my mobility. I cannot sit up straight. Cerebral Palsy causes involuntary body and facial movements. I have a significant speech impairment. I have always been a strong disability advocate. The Disability Movement has resulted in many great civil rights laws and a much more physically accessible nation and world. My disability advocacy successes have come from my active participation with my family, friends, and the Jewish and business communities. Here are 2 examples;

After working at Wells Fargo for a year, I needed something from the data center. At that time, the data center was just a few floors below where I worked. I called, and the person who answered the phone made fun of my speech and hung up. I tried again, and the same thing happened. I told my manager what happened. My manager was livid. He wanted to get the operator reprimanded and fired. I asked my manager to simply let me know the name of the operator. Knowing the operator's name, I went down to the data center. When I got there, several people who knew me came over to say hi and find out what I needed. After getting my question answered, I ask them to tell me who so-and-so was. They pointed to him. He turned and faced me. He turned pale. I said, “Hi, how are you?” and left, He became one of my best allies.

Often at Wells Fargo, I attended meetings where many of the attendees didn't know me. I was amused by seeing the fear on their faces as they saw me for the first time. The air in the room sometime was very thick due to their anxiety. If I led the meeting, I'd say something like, 'for the next few minutes, you probably won't understand what the hell I'm saying because of my New York accent – haha). As the meeting progressed and we started talking about work, I loved seeing faces relax and the air clear as they forgot about how different I looked and sounded.

I am extremely fortunate to have parents who knew the importance of assimilation. Being survivors of the holocaust, they worked very hard to assimilate into America's culture while always remembering their Jewish heritage and advancing their Jewish culture. They demonstrated how people can assimilate without conforming. Assimilation is fitting in by emphasizing commonalities and positivity. Conforming asks people to change who they are and what they believe. My parents

always told me that due to my disability, I had to be better and work harder than people without disabilities. The way people viewed and reacted to me was my problem and my responsibility to change. 

Blaming others for their feelings and sins of their heritage too often diminishes our ability to affect real change. Burdening marginalized individuals with continually having to combat negative stereotypes and discrimination is difficult and unfair. Diversity awareness training must continue. However, more emphasis needs to be made to ensure that people feel good about themselves, be proud of the group(s) they identify with and have the skills to assimilate with others. True diversity will happen as we work, play, and interact with each other.

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A Plan to Achieve Healthcare For All

Neil's Challenges not Barriers Blogs

A Plan to Achieve Healthcare For All

July 2019

It's great to see that most people in this country recognize the necessity of having healthcare for all. This blog suggests that a Central Healthcare Agency and Marketplace (CHAM) is needed. Some of the goals and objectives of a CHAM include:

1. Ensuring everyone has access to excellent and affordable healthcare, including Long Term Support Services.
2. Setting standards and price ranges for healthcare products, services, and insurance plans that are subsidized.
3. Ensuring that no one needs to pay more than a percentage(5%?) of their annual income for healthcare premiums and no more than an additional rate (5%?) for their total yearly healthcare costs.
4. Enabling the private sector to provide healthcare products, services, and insurance plans that meet and surpasses standards set by CHAM. Anyone willing and able to pay healthcare costs that exceed CHAM's standards can do so.
5. Ensuring that healthcare costs are sufficient to
   1. attract people to healthcare jobs and professions,
   2. continually improve products, services, and facilities, and
   3. promote innovation, research, and ever-increasing quality of care.
6. Enabling employers and other third parties to offer healthcare plans either through their chosen vendor and/or by contributing to an individual's CHAM account.
7. Confirming that most people all along the wealth spectrum see the system as equitable.
8. Encouraging competition and healthcare investments.
9. Ensuring that the system is economically self-sustainable.

The CHAM will set minimum standards for healthcare and long term support services. State and/or community CHAM boards will establish price ranges for all products, procedures, drugs, and other commodities associated with these services. Price ranges will also be set for healthcare plan expenses, including premiums, deductibles, copays, and out-of-pocket expense caps.

Private and public enterprises will sell their healthcare plans through CHAM. Each plan must offer all of the minimum set of healthcare products and services set forth by CHAM. Enterprises that currently don't provide the complete set should collaborate with other enterprises to ensure comprehensive healthcare and long term support services are available to everyone.

Individuals and households will sign up to be members of CHAM. Members will be charged monthly premiums that are a percentage (5%?) of their taxable income. Members total annual out-of-pocket healthcare expense will be capped at an additional rate (5%?) of their taxable income. Members choose any healthcare plan they want. CHAM pays all healthcare charges that meet CHAM standards and are within CHAM's price ranges. Members can select programs whose healthcare plans expenses exceed CHAM's ranges by waiving CHAM's responsibility to subside any of the member's healthcare charges for that enrollment period. Members will be charged for deductibles and copays up to their annual out-of-pocket expense cap. Members will also be charged for products and services that are not covered by CHAM standards or exceed CHAM's price ranges. See examples below.

This proposed plan needs to be vetted by healthcare professionals, the general public, economists, healthcare plan managers, healthcare insurance carriers, and legislators to ensure that the goals and objectives listed above are met.

I look forward to your feedback.

Examples

Re Healthcare Premium

CHAM's member's premium cap = 5% of taxable income

CHAM's price range for premiums = $0 - $400

1. Example 1
   1. Characteristics
      1. Member taxable income = $10,000
      2. Healthcare premium = $200
      3. Member does not waive CHAM subsidy
   2. Member Pays $500 for premium (5% of $10,000)
   3. CHAM Pays $0 subsidy for premium

2. Example 2
   1. Characteristics
      1. Member taxable income = $1,000
      2. Healthcare premium = $200
      3. Member does not waive CHAM subsidy
   2. Member Pays $50 for premium (5% of $1,000)
   3. CHAM Pays $150 subsidy for premium

3. Example 3
   1. Characteristics
      1. Member taxable income = $10,000
      2. Healthcare premium = $550
      3. Member has to waive CHAM subsidy or choose a different plan
   2. Member Pays $550 for premium
   3. CHAM Pays $0 subsidy for premiums

4. Example 4
   1. Characteristics
      1. Member taxable income = $10,000
      2. Member does not waive CHAM subsidy
      3. Healthcare premium = $550
   2. Member Pays $550 for premium
   3. CHAM Pays $0 subsidy for premiums

The Need for Long Term Support Services

Neil's Challenges not Barriers Blogs

The Need for Long Term Support Services

      Any healthcare plan that purports to be available and affordable for everyone should include provisions for long-term medical expenses, aka Long Term Support Services. These services include such things as personal assistant services, durable medical equipment, long term therapies, and maintenance drugs. The California Regional Center System can serve as a model for this.

      For many people with disabilities, Long Term Support Services can be very costly. In recent years, personal assistant services expenses for me, and my wife exceeded $100,000 annually.

      Currently, Medicaid is the only healthcare plan that funds long-term medical expenses that are expected to be needed more than a few years. Medicaid is only available to people living at or near poverty levels. Many people with disabilities don't work for fear of losing healthcare and Long Term Support Services they need to survive. They remain beneficiaries of the Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) Programs primarily to qualify for Medicare and Medicaid. 

      Many programs aim to assist people with disabilities to attain employment and receive the services they need. They differ by state, county, and city. They are administered by different public and private agencies. They depend on many factors, including beneficiaries' age, disability, income, assets, onset age of impairment, the reason for disability, military status, etc. These programs are very interdependent and often are too complicated for people to understand. There are many experts, websites, and businesses that try to help people through these 'disability benefits' labyrinths.

      Unfortunately, there is no comprehensive process for people with disabilities to ensure our financial health and get the Long Term Support Services we need. As an example, it was only 5 years ago that one of my attendants pointed out that my wife and I, who both have Cerebral Palsy, qualify to be California Regional Center System clients. This agency funds Long Term Support Services for people with developmental disabilities, regardless of income or assets, if no other agency does so. Cerebral Palsy is a developmental disability.  I think I am well connected in the disability community and pretty knowledgeable about disability-related programs. Not realizing the advantages the Regional Center System offers illustrates the need for a simple-to-understand universal healthcare system that includes Long Term Support Services.

       Annually, millions of dollars are spent trying to improve employment opportunities and the financial health of people with disabilities. It would be interesting to understand what affect simply enabling this cohort to keep their Medicare and Medicaid regardless of the income or assets they garnered. Given the dismally low number of people who leave Social Security Disability Programs due to finding gainful employment, it is surmised that any increase in Medicare and Medicaid cost may be offset by increased tax revenue and savings in other government programs. 

      It is encouraging to see that most people in this nation now recognize the need for universal healthcare. Long-term medical expenses must be an integral part of any healthcare system.

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July 2019

Disability-Related Financial Management System

Disability-Related Financial Management System (DFMS)

There is a need for financial advisors, disability benefits experts, and AI developers to develop a comprehensive Disability-Related Financial Management System. Combining artificial intelligence,(AI), a search engine, automation, and human experiences is the only way a genuinely comprehensive Disability Finance Knowledge-Base can be implemented and kept current. A public forum will enable people with disabilities, their family and friends and support group to obtain answers from the knowledge-base as well as other people in the forum. Ratings of responses by forum members will ensure the knowledge-base continues to have the most accurate information. The DFMS will include AI-driven questionnaires and bots that will assist users in building and maintaining budgets that will maximize their chances of financial stability and success. Financial advisors will also be available.

Disability benefits are complex. People have compared it to business payroll but many times more complicated. With business payroll, every state, county, and city has its own rules that may be affected by healthcare plans, retirement plans, savings plans, etc. Disability benefits to differ by state, county and city. Many agencies and corporations offer disability benefits also. Disability benefits depend on many factors including beneficiaries' age, disability, income, assets, onset age of disability, the reason for disability, military status, etc. With business payroll, there are systems built to shield the complexities from businesses. No subject matter expert would be expected to know all that is involved with business payroll without using a system. Yet with disability benefits, we do rely on subject matter expert to know and how people with disabilities can get financing for the products and services they need. To date, our efforts with artificial intelligence are to try to mimic what disability benefits subject matter expert does. We need a system that will comprehensively discover where and how people with disabilities can finance the products and services they need.

There are many good forums re disability benefits see Social Security Forum¹ as an example. There are calculators that help people with disabilities understand disability benefits. As an example, see WID's DB101². There are courses on disability benefits including a certification process. There are books written to help people with disabilities improve their financial health. Tom Foley wrote EQUITY-Asset-Building-Strategies-Disabilities-Empowerment³. All of these are great resources based on the knowledge of subject matter expert. None uses a comprehensive, systematic approach.

In the past few years, I have been 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.

Many surveys have been done to understand the financial health of households that have one or more people with disabilities in them. Every study confirmed that the Disability Community has many unique financial needs that are not being met. 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. 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 of resources that can help them with financial management and financial planning. They are unaware that there are financial 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.

With an effective Disability Financial Management System, a very necessary and profitable business can be established.

Please let me know if you have any questions. Please let me know if you or anyone you know may be interested in investing and/or managing this exciting endeavor.

Go! Go! Go!

1https://www.ssdfacts.com/forum/

2https://www.db101.org/

3https://www.amazon.com/EQUITY-Asset-Building-Strategies-Disabilities-Empowerment-ebook/dp/B01B6ONWGW/ref=sr_1_1?s=books&ie=UTF8&qid=1531418297&sr=1-1&keywords=thomas+foley+disability

Abilicorp 2019

Abilicorp

2019

Vision:

Everyone, including people with disabilities, should have the skills, products, and services they need to work to the best of their abilities.

Mission:

Abilicorp mission is to initiate and promote new companies and programs that provide financial advice and management enabling people to work and reap the stability and rewards that come with earning an income.

Background:

Neil Jacobson, founder, and CEO of Abilicorp retired in 2008 as a Wells Fargo Sr. Vice President after working in their IT area for more than 29 years. Neil has significant disabilities caused by Cerebral Palsy. He has been active in the Disability Movement all through his life focused primarily on improving employment opportunities for people with disabilities.

The U.S. federal government spends more than $100 million annually trying to improve the economic condition of people with disabilities and their families. Wonderful laws such as the Americans with Disability Act that have significantly improved the lives of people with disabilities. Many agencies work extremely hard trying to get people with disabilities jobs. Despite all this, the unemployment rate for this cohort remains relatively unchanged from the 1960s. More than 70% still live below the poverty level. (see The Need for a New Business Model)

The underlying cause for this lack of economic improvements is that people with disabilities are not receiving the skills, products, and services they need. Many public and private agencies run programs designed to provide these necessities. They are tough to find. Qualifying for them can be challenging. The interrelationships between the programs are often extremely complex.

The gig economy is now compounding these problems. 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 for themselves 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 market their products and services effectively. (see The Gig Economy)

What does Abilicorp provide?

1. Financial advice for independent workers
2. Development consultation of disability-related financial management tools
3. Promotion of Disabled Owned Business Enterprises

What Businesses Should Be Started?

1. Financial Management for GIG Workers
2. Financial Management of Disability-Related Expenses
3. Remote Assistance
4. Your Legacy
5. Archiving
6. Creating Audio Books for Authors

Blogs will be written describing these and other exciting initiatives. These services and businesses will be owned, managed, and delivered by self-employed people with disabilities and Disabled Owned Business Enterprises. Please let me know if you or anyone you know may be interested in investing and/or managing any of these endeavors.

DRFM Knowledge-Base

Disability-Related Financial Management Knowledge-Base (DFMKB)

Having a disability can be very costly. Disability-related expenses include:

1. personal assistant services,
2. durable medical equipment,
3. long term therapies,
4. maintenance drugs
5. wage replacement
6. adaptive equipment
7. accessible transportation
8. home accessibility improvements
9. workplace accessibility improvement

Many government and non-government agencies offer disability benefits to pay for these expenses. These disability benefits are often based upon a person with a disability's attributes including;

1. where the person lives (U.S., state, county, city)
2. age (<18, 18-26, 27-64, >64)
3. disability ( developmental disabilities, visual disabilities, deaf or hard of hearing, spinal cord injuries, autism, mental health, cognition, emotional, drug addiction
4. reason for disability (work related, crime-related, military related, accident, birth, genetic, aging)
5. disability onset age (birth, <18, <27, 27-65, >65)
6. work status (never worked, working, “on disability,” retired
7. income
8. assets

Each disability benefits from each agency usually have its own conditions including;

1. Definition of products and services offered
2. Definition of terms
3. Eligibility criteria for beginning to receive a disability benefit
4. Criteria for continuing to receive a disability benefit
5. Application process
6. Reporting requirements
7. Restrictions
8. Exceptions
9. Interrelationships with other disability benefits and agencies

A comprehensive systematic approach is needed to build a Disability-Related Financial Management Knowledge-Base (DFMKB) to understand which disability benefits are available to an individual given his/her needs and attributes, and the conditions under which the disability benefits can be recognized.

Most, if not all, of the information, can be found on websites. Using AI, the Google Search Engine, the Disability Financial Management Forum, and disability benefits subject matter experts, this can be accomplished. Using the DFMKB, providing financial advice to the Disability Community can be a profitable business.

Please let me know if you or anyone you know may be interested in investing and/or managing this exciting endeavor.

Neil’s WID Conference Speech – Oct. 2014

Neil’s WID Conference Speech – Oct. 2014

I firmly believe that all people must work — even those with disabilities like me. Work brings meaning to life, provides essential social connections and allows people to provide economically for themselves and their families. I was fortunate to have had the values of hard work and independence instilled in me as a young child growing up with cerebral palsy. My parents taught me that I was capable of working despite my disability and achieving personal reliance. As a result, for nearly 30 years I built a career at Wells Fargo, rising to senior vice president of information technology. Also, I helped create the World Institute on Disability’s Center on Economic Growth in 2011. Work gave me a purpose. Work made me proud. Work allowed me to gain economic independence and build a secure financial future.

Unfortunately, our nation has set very low expectations for people with disabilities in terms of employment. This low expectation starts with the government’s definition of disability as the “inability to work.” Under current Supplemental Security Income (SSI) rules, an individual with a disability must prove they cannot work to be eligible for benefits, including health care and other independent living supports. Individuals with disabilities exploring work must balance the need for financial assistance, health care, personal attendant care, and accommodations while overcoming low cultural expectations, lack of employment experience, a challenging job market and employer discrimination.  On top of that, the complexity of the system and disincentives resulting from reliance on vital health care resources and the inability to retain earned assets and remain SSI eligible often prove to be too challenging.

Our current system is written for another time, when we assumed people with disabilities would be dependent on their whole lives on the support and help of the government and others. The Federal government literally called these programs “Aid to the Permanently and Totally Disabled.” These days, new technology, medical breakthroughs, and a recognition that people with disabilities want to work has destroyed this outdated thinking. We need to change with the times. It is time to modernize the traditional SSI program.

This is why WID partnered up with the National Council on Independent Living and Policyworks to design CareerACCESS. CareerACCESS offers an alternative for SSI eligible young adults to escape poverty and dependence. The CareerACCESS goal is to make it easy to work. A young adult working with a Career Coach would develop an Individualized Career Plan to achieve personal and professional goals. CareerACCESS rules would allow increased earnings and remove asset limits to enable the participants to gain financial independence.

For this initiative to get implemented, young adults with disabilities across the US need to take charge of CareerACCESS for change to happen. We need to work together to implement a system that will offer real hope for people with disabilities to fully participate in the nation’s economic growth and achieve their own career goals and independence. Young adults are the voice of the future and represent the change that can take place.

WEB Accessibility Professional Certification Program (WAPCP)

WEB Accessibility Professional Certification Program (WAPCP)

(This was written in January, 2010. It was not funded. A Disabled Owned Business Enterprise should run with the idea!)
 

 The Computer Technologies Program (CTP) and Abilicorp are seeking $65K in funding to develop, pilot and establish a WEB Accessibility Professional Certification Program (WAPCP). This program will train people with disabilities to analyze and ensure websites meet accessibility standards set forth by the World Wide Web Consortium (W3C) Web Accessibility Initiative. Graduates of this program can expect to be employed by Abilicorp and other firms whose business it is to ensure that companies and government agencies websites meet accessibility standards. Once established, WAPCP is expected to be self-sustaining through tuition reimbursement and profit-sharing.

As the internet nears ubiquity in everyone’s life, the need to ensure website accessibility becomes paramount. While the internet can literally open the entire world to people who can access its websites, the internet can also shut out the world to people who cannot access them. Studies have shown that 94% of all sites do not meet accessibility standards and therefore are unusable by up to 18% of the population. This is even though laws including the ADA clearly mandates that websites be accessible. Several large companies, including Target, have recently lost lawsuits claiming their sites to be accessible.

Who better to be WEB Accessibility Professionals than people with disabilities? Who better to implement the Website Accessibility Adherence Program than agencies focused on employment for people with disabilities?

CTP has been successfully recruiting, assessing, training and placing people with disabilities in computer-related fields since 1975. Abilicorp is a disability-focused employment company that does staffing and placement. Abilicorp also provides on-going support services such as mentoring, benefits counseling and adaptive technology assessment and sales. Abilicorp is the first Disabled Owned Business Enterprise certified by the US Business Leadership Network (USBLN).

Abilicorp started doing business in November. In an era of high unemployment and a downsized economy, competing for positions against people who, for the most part, have much more actual work experience proved to be very challenging. It became evident that specialized training that would distinguish Abilicorp “Associates” from the masses is a way to mitigate this problem. Jobs need to be found or created for which people with disabilities are or can be uniquely qualified. Testing and modifying websites, so they meet accessibility standards is an example of an emerging field that people with disabilities can and can be trained to do well. Filling these jobs would give people with disabilities the work experience they need to compete for traditional employment, and would provide Abilicorp the exposure it needs to place other people with disabilities in traditional positions. Neil Jacobson, the Founder, and CEO of Abilicorp, was a co-founder of CTP. It seems natural now to combine efforts through a formal collaboration. WAPCP is their 1^st joint venture.

Disability-related soft skills training have always been CTP’s distinguishing forte. These soft skills include being able to comfortably talk about one's disability, knowing how to ask for accommodations and managing Personal Assistant Services at work. Being able to teach this remotely will greatly enhance CTP’s ability to reach many more people with disabilities than the on-site model. Combine this with teaching a unique emerging technology such as WEB accessibility, and you have a course many people will want to take. Combine this with actual careers assisting companies, and government agencies in bringing their websites into ADA mandated accessibility, and you have a program that is sustainable and profitable.

Please let me know if you have any questions or need more information. We look forward to partnering with you on this important and exciting project.

People with Disabilities - An Untapped Resource

 People with Disabilities - An Untapped Resource

(This was published in the URJ 'Torah at the Center' - Oct.2009)

I am often asked, “how can my Temple be more welcoming to people with disabilities?’ I say, get us involved. Help us understand how we can contribute to the synagogue. Help us feel needed. Help us feel wanted.

I am a Board member of Temple Sinai in Oakland and the Chair of its Access Committee. After 29 years of working at Wells Fargo, I retired last year as a Senior Vice President to be the CEO of a nationwide staffing and placement company. I have a significant disability caused by Cerebral Palsy which results in my having very slurred speech, requires me to use a powered wheelchair and necessitates that I do activities of daily living in creative ways.

My wife, Denise, who has a similar disability to mine, started the Access Committee many years ago. The Committee worked hard to get common accessibility issues resolved. Temples need to be wheelchair accessible with wheelchair seating throughout. The Arc and Bima must be accessible. The table where the Torah is read from must be accessible. There need to be Braille prayer books and hearing devices. There need to be tables at Oneg’s and Temple events where people can talk. Drinking straws at these events are also required. Temple meetings need to be held at accessible locations, etc. However, all of these things put the person with a disability on the receiving side of assistance. To feel included, it is vital to be on the giving side as well.

The time I felt the most accepted was when our son, David, was a baby. Since Denise had 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! (By the way, he’s 22 now and still demanding things – but that’s another Article)

One of our Rabbis, Rabbi Berlin, relates how as a child, her family found a welcoming Temple. Her family, which included a brother with a developmental disability, did not feel welcomed at their old Temple. The Rabbi at the new Temple immediately asked her brother to please turn the lights off before Havdallah and turn the lights back on at the end of the service. The boy was thrilled! From then on he had his job. He knew he was needed. He and his family knew they were wanted! The Rabbi had created an environment where everyone felt valued.

Unemployment rate for people with disabilities still hovers around 70%. This is the same as it was when I grew up in the 1950s. That was before we had all the wonderful laws we have now such as the ADA, 504 and IDEA. This lack of progress is not due to a lack of skills, or education or motivation, but more often lack experience. Children with disabilities rarely are given chores to do. Teens with disabilities are allowed not to participate in school, or sports or religious school. Adults with disabilities are permitted not to work. What better place to get real work experience than in one’s own synagogue

With all the work that goes on in and around Temples, the opportunities to get people involved, including people with disabilities is enormous. While I know that congregations and synagogues will continue to find ways to support people with disabilities, please also consider people with disabilities as an untapped resource. As you find jobs and tasks around your Temple, or Community, or Home or where you work, consider using this untapped resource. People need and want to feel they are part of a community and to be part of Tikun Olam. Become a welcoming community by providing opportunities for everyone to do so.

Social Capital

Social Capital

Social capital has been defined as the connections and relationships that develop around the community and the value these relationships hold for the members. It includes feelings of gratitude, reciprocity, respect, and friendship. It is an asset that resides in an individual’s relationships and consists of the goodwill flowing from friends, colleagues, and other general contacts.
(1) To what extent has social capital been vital in achieving your life goals (employment, independent living, etc.)?
(2) What have you done to increase your social capital? (Provide examples.)
(3) What have others done to improve your social capital? (Provide examples.)

Social capital is the ability to be liked. It is by far the most crucial asset anyone has in both professional and personal lives. All other assets and attributes can be acquired or compensated for if a person knows how to be liked, knows how to engage with people, knows how to appear to be alive, engaging, excited about life, etc.

I am a 63-year-old retired Wells Fargo Sr. Vice President. My wife and I have been married for 33 years. We have a 29-year-old son. I've always been very active in the Disability Movement. I have Cerebral Palsy. I use a powered wheelchair, I have a significant speech impairment, and I need 10 hours a day of personal assistant services to help me with my activities of daily living. I know first hand the importance of social capital.

At Wells Fargo, my area was a highly skilled technical area. We did information technology for the Bank. Often, when I attended meetings with people I didn't know, I observed their eyes grow wide, and their body grow tense as they looked at me not knowing what to make of this odd looking guy in a wheelchair. I always took on the responsibility of making them feel at ease. I'd crack a joke about my 'New York' accent, or engage them in chit chat. I knew that unless they felt comfortable with me, our work could not proceed.

When I interview candidates, for the Bank or to be attendants or whatever, I focus on their personality. Can we get along? Can my teamwork with them 8+ hours a day? Are they excited about being there? Are they excited about being alive? Are they engaged with the conversation? I know that all the technical stuff can be learned if social capital is there. Conversely, without social capital, technical skills are often useless.

Similarly, social capital is critically important in my home life. Working with attendants is always more comfortable and much more pleasant when social capital exists. Both parties are responsible for creating a good rapport with each other and to enjoy each other's company.

Here is an example of what I've done to increase my social capital. When I first worked at Wells Fargo, my team members always went to a bar Friday afternoons. I hate the taste of liquor. I quickly learned the importance of joining them at the bar – that was where many decisions were made. My drink – rum and coke without rum. I've often said that one of my most significant handicaps working for a Bank was my dislike for wine and sports. Many company dinners were preceded by hours of wine tasting. Many company meetings were held right before sports events. I attended every party, dinner, and function that I could, and I enjoyed them too!

An excellent example of how a colleague helped me increase my social capital happened several years after I started working at the Bank. I complained that at many of the Bank's functions, everyone stood and chatted with each other/ From my wheelchair, all I could see were butts and … No one could hear me above the din. My colleague suggested that before each function I contact people I wanted to meet and arrange times they could fit me in the hallway, sit down, and chat with me for a few minutes. It worked! I met many people that way, and it was fun!

There are always ways to increase one's social capital. It's fun, and it's well worth the investment!

Go! Go! Go!

Responsibility Is A Good Thing

Responsibility Is A Good Thing

Imagine going into your 9-month old son's room to find him sitting atop his 5.5 feet tall dresser adjacent to his crib. Imagine you and your wife sitting in your wheelchairs staring up at this smiling boy knowing there's no way either of you is able to reach your son to get him down from there. What do you do? Well, after gasping for air, my wife, Denise, looked at me and said, “Well, if David was able to get up there by himself, he should be able to get down by himself.” Sure enough, with just a little coaxing from us, he went on his stomach and slid safely back into his crib. The look of success on David's face was precious!

A few years later, when David was 4, we had a friend of his over for lunch. The friend was the same age as David. We had a snack that day. As was usual in our house, David got the cookies from the cabinet and the milk from the fridge. David proceeded to pour the milk into glasses for all of us. His friend was wide-eyed. “Wow,” he said, “Your parents let you pour milk! That is so cool!” Little did the friend realize that with our disabilities, neither Denise or I could pour very well and that David had been doing so since he was about 2. The look of pride and success on David's face when he heard his friend praise him was unforgettable.

As years go by, it seems that children have less and fewer responsibilities. This seems especially right for youth with disabilities. More often than not, they learn how to accept assistance, but rarely how they are needed and what their responsibilities may be.

I was fortunate to have the values of hard work and independence instilled in my life from an early age. As a child with cerebral palsy, my parents did all they could to foster my self-reliance. My mother woke me each morning and would insist I dress, even though it took two hours to do so. At night, I’d get two dinners. One dinner I had to feed myself; the other I was provided assistance to ensure I got enough to eat.

These approaches may sound extreme, and today I know that a key to independent living is knowing when and how to get help. But for my parents, work was, quite literally, a life and death matter. As Holocaust survivors, they had seen how those who could not work were considered worthless and were the first to perish in ghettos and concentration camps. They showed me that determination and perseverance are the key to achievement and that I had a responsibility to do well.

For me, the payoffs have been enormous. Despite my visible disability — I can’t sit upright, I have involuntary movements and my speech impairment is significant — for nearly 30 years I built a career at Wells Fargo, rising to senior vice president of information technology. Work gave me purpose. Work made me proud. Work allowed me to gain economic independence and build a secure financial future.

I believe that it is essential for us to instill the values of determination and perseverance in our children and set the example that they too can gain economic independence whether or not they have disabilities. In my retirement, I am working on reforming Social Security policies to encourage youth with disabilities to enter the workforce and gain independence despite the challenges they may face. The current Supplemental Security Income (SSI) Program has many work disincentives that make it difficult for youth with disabilities to go to work and still receive services they need. The proposed program, CareerACCESS, will be created by changes in federal policy aimed at significantly increasing the employment rate of people with disabilities. The program expects 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.

As we go about our ever-increasingly busy life, let's not shy away from giving our children the responsibilities they need and deserve. Responsibility is a good thing!

Research Needs

Research Needs

The Disability Community is a very well-researched community. https://researchondisability.org/ is the site I use most often. The FDIC Read 2015 Full isanother example. All studies show that most people with disabilities live in poverty. Despite wonderful laws and millions of dollars spent annually promoting employment for people with disabilities, the unemployment rate remains above 70%, the same as it was in the 1950's. Poverty breeds poverty.

Money phobia is a big problem in the Disability Community. There are several reasons why people with disabilities have money phobia. Perhaps the biggest reason is that people with disabilities often rely on government benefits to get services they need to survive. These services are only available to people who are poor. People with disabilities are taught that if they earn more than a minimal amount of money or if they save and build assets they will not receive services they desperately need. These services are too often viewed as charitable tasks allowing people to survive rather than important jobs that enable people to truly live and thrive. There are many great programs available that enable people with disabilities to work and still receive sthe ervices they need. However, these programs often are complex and very difficult to understand.

Using myself as an example, when I first went to work full-time in the 1970's, it took more than 5 years to earn what I was receiving from disability benefits. Although I've always stayed well connected with the disability advocacy community, I was 62 years old before realizing I could receive personal assistant services paid for through the California Regional Centers because I have a developmental disability- Cerebral Palsy. I'm saving well over $50,000 annually.

Research is needed to understand the economic value of Disability Related Financial Management. It should be on par with Retirement Planning. Disability benefits financial advisors are needed.

Research is needed to understand the economic benefits of providing long-term medical expenses including personal assistant services, durable medical equipment, long term therapies, and maintenance drugs to everyone. How many more people would be employed if they received sthe ervices they need? How many people would need to be employed for this to be economically feasible?

Research is needed to understand fthe inancial needs of caregivers/personal assistants. Are they contributing to Social Security, savings, investments, etc?. Are they getting healthcare? Are their economic value recognized? Can technologies, such as webcams, reduce cost by enabling remote assistance?

Research and investments are needed to determine how assistive technology can be used by the general public. People who are deaf or hard-of-hearing have been texting for many decades. People with visual disabilities have been using speech recognition for decades too. It has only been since these technologies have been used by the general public that the cost has been lowered to a reasonable rate.

Research is needed to determine how Disabled Owned Business Enterprises can best be supported. How do these businesses compare to other minority owned businesses? Are there financial and managerial support available?

Re-Assessing My Work - May 2017

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 Abilicorp, and I 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 one's 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 one's 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 indeed cannot work. Please read the 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 an excellent 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 old definition of disability. CareerACCESS has been the main focus of my work for the last four years. It is exhilarating 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