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Policy Education Meeting on Supplemental Security Income Issues for People with Disabilities who have Careers in the Arts

December 7, 1999

Report and Recommendations

TABLE OF CONTENTS

Welcome and Opening Remarks

Panel 1: Personal Experiences of Artists

Panel 2: Navigating Through the SSI Income and Resources Provisions

Panel 3: How Employment Trends Impact

Work Incentives and Pending Legislation

Group Discussion: Recommendations for Removing Barriers

Attachment 1: Navigating Through the SSI Income and Resource Provisions

Attachment 2: The Ticket to Work and Work Incentives Improvement Act of 1999

Policy Education Meeting on

Supplemental Security Income Issues for

People with Disabilities who have Careers in the Arts

Senate Dirksen Building SD-106

December 7, 1999

Meeting Report

Dr. Susan Daniels, Deputy Commissioner for Disability and Income Security Programs at the Social Security Administration, convened the policy education meeting on people with disabilities who have careers in the arts. She stated that this meeting began as a collaborative effort with the National Endowment for the Arts, the Department of Health and Human Services, the Department of Education, and the Social Security Administration (SSA). The government is trying to create realistic options for people with disabilities by passing the Ticket to Work and Work Incentives Improvement Act (TWWIIA) of 1999. (President Clinton signed TWWIIA into law on 12/17/99.) This legislation will assist people with disabilities to enter the workforce and to keep their health benefits for an extended period of time. More specifically, it will assist people with disabilities who have or want to have careers in the arts. Dr. Daniels stressed the need for partnerships in society so that more people with disabilities are given the opportunity to work. Dr. Daniels then introduced representatives from the other government agencies sponsoring the meeting.

Dr. Frederic Schroeder, Commissioner of the Rehabilitation Services Administration in the Department of Education, stated that discrimination due to one’s disability is well known to all who are present today. He went on to say that there exists an added discrimination or assumption that any career in the arts is considered speculative, because many are reluctant to view the arts as a viable means of employment. He also stated that many rehabilitation professionals have a limited exposure to and education in the arts and their related careers. Thus, many rehabilitation professionals guide people with disabilities into other careers than into the arts and its related careers. He suggested that there be an expansive opportunity for individuals with disabilities to educate rehabilitation specialists in the opportunities for employment in the arts.

Bill Ivey, Chairman of the National Endowment for the Arts, commended colleagues from other Federal agencies for their work in addressing the needs of artists with disabilities, stating that together we must find ways to increase education, training, and job opportunities for the artists. He expressed appreciation for Senator James Jeffords, whose efforts made it possible for the meeting to be held in the Senate Dirksen Building. He also thanked the other agencies for sponsoring this event. He stated that the National Endowment for the Arts is a grant-making agency, but it is also very concerned about the well being of artists and arts administrators and about conditions that impact their careers. He continued that many artists with disabilities forgo accepting modest government grants and apprenticeships for fear of losing their lifeline to medical and other benefits. As a folklorist, he has witnessed firsthand how older individuals and people with disabilities have been impacted. Some artists who accept funds from the Arts Endowment or their State arts agencies have lost their benefits for months—or even years—before being reinstated. As Federal agencies, we must work together and collaborate to help artists with disabilities retain their benefits while accepting support from their work. Dr. Daniels added that it is very important to find solutions to disincentives to work. People also need to understand how laws can be applied and how people can change what does not work for them.

Becky Ogle, Executive Director of the Presidential Task Force on Employment of Adults with Disabilities, added that the mission of her office is to:

• eliminate such employment barriers for people with disabilities;

• make the employment rate for people with disabilities similar to the employment rate for people without disabilities; and

• create a coordinated strategy with Federal agencies by July 26, 2002.

Ms. Ogle added that the Presidential Task Force is interested in enlisting public opinions of what should be done to eliminate employment barriers for people with disabilities. She realizes that the employment barriers that artists face are unique, and not easily tackled. She stated that with the passage of the Ticket to Work and Work Incentives Improvement Act, a lot could be accomplished if everyone cooperates to find solutions.

Derek Gordon, Vice-President in the Education Department of the John F. Kennedy Center for the Performing Arts, said that the Kennedy Center is a practitioner of the arts and shares extraordinary presentations from artists. He added that it takes a long time to create and develop the arts, and practicing the arts can change lives. Artists with disabilities add unique views of the arts to society. He challenged everyone to focus on young people with severe disabilities who have dreams of becoming artists. This field will--and needs to continue to--prosper.

Sue Swenson, Commissioner of the Administration on Developmental Disabilities in the Department of Health and Human Services, pointed out that the Khmer Rouge in Cambodia conducted a deliberate campaign to eliminate artists. This campaign reduced the number of artists in their nation. The current government there is educating young Cambodians in the traditions of the country, including its arts. Ms. Swenson added that, in our own country, people who are profoundly disabled often are not valued as highly as other people are. Many in the United States are struggling to change this mindset. She challenged the audience to help change people’s attitudes so that the U.S. can become a model for other nations. She stressed that the measure of a society lies in the values of its people. Advocacy must begin with artists themselves. Only then will change occur in people’s perception of artists with disabilities.

Jonathan Young, Associate Director of the Office of the Public Liaison at the White House, stated that coalition building is key to the collaborative process. People with disabilities have the same aspirations as others. The new legislation, once signed, will have a significant impact on artists with disabilities. Dr. Daniels added that artists with disabilities need to be advocates and make the arts understood as a viable career opportunity.

Panel 1: Personal Experiences of Artists

Judy Heumann, Assistant Secretary, Office of Special Education and Rehabilitative Services in the Department of Education, introduced the members of this panel to the audience. She said that artistic activity is important. People with disabilities who create art forms are very important to our culture. Art itself is such a competitive field and to have artists with disabilities out in the world working to make a living like their non-disabled counterparts is very important. She added that States have to make a conscious decision about the Kennedy-Jeffords Bill (enacted as the TWWIIA of 1999). Everyone here today needs to ensure that the legislation becomes a reality.

Alana Yvonne Wallace, Artistic Director of Dance Detour, stated that, for most people with disabilities who consider or decide on a career in the arts, discouragement begins early. As children with disabilities, they are looked at differently. Frequently, they are stared at or made fun of by other children. These messages and actions affect all people with disabilities. People with disabilities do not want to be looked at as unsightly. In her own life, she responded to this stigma as a challenge. Arts got her through her orthopedic surgery. (She used to sing along with LP’s as therapy.) Those children who were taught not to stare or look at children with disabilities may have ended up as SSA office workers or VR counselors.

If an artist with disabilities tries to persevere, accepting little jobs, the income is not enough to survive on. This becomes a double-edged sword. If an artist makes a little money doing what she has always wanted to do for a career, her benefits may be in jeopardy. Artists with disabilities are told about the "trial work period" (TWP) and work incentives, and many times a red flag goes up. She knows that people are scrutinized, but one has to prove that one is disabled enough through medical reviews and appeal processes.

Artists with disabilities want to work, if only the arts can support them. Artists’ earnings are sporadic, and they often do not support day to day existence. It is important for artists with disabilities to be a model to show that arts as a career choice for people with disabilities can be a viable means of earning income. Judy Heumann added that people with disabilities could be touched in meaningful ways by the arts. All artists present need to exchange telephone numbers so that they can share problems and issues that arise concerning PASS plans, 1619, TWWIIA, and other legislation.

Mary Verdi-Fletcher, artist and Founding Director of the Cleveland Ballet Dancing Wheels, chose a career in the arts because she was taught to look at disability as a secondary condition and place a primary focus on the individual. She developed and created on her own a nonprofit organization called Professional Flair that is designed to help those with and without disabilities in pursuing a career in the arts. She believes that if you empower people and give them the necessary tools, their dreams can become reality. This is the tenth season of Professional Flair. They have traineeships, internships, categories of members, and three dancers. This organization also has employment systems offering supports.

The problem she faces with SSI and SSDI is that she can only keep herself at an apprenticeship level to receive her benefits. If she takes an employment risk, this may jeopardize her benefits, and she already knows that Professional Flair cannot provide her health care benefits. She has one artist who juggles two jobs to protect her benefits. This person had to prove that she had a disability. This person still practices her art, with pride, and lives as independently as possible. If she loses her health care, it will end her work.

The government needs to find a way to use the law to help artists with disabilities pursue their careers and protect their health care benefits. The government needs to look at the value artists bring to the nation. (Artists with disabilities give anywhere from 100 to 150 shows per year). The government needs to protect the health care benefits of artists with disabilities and free them from the fear of loosing these benefits. Future generations need to know that a career in the arts is a viable and gainful way to be employed.

Dan Sheehy, Director of Folk & Traditional Arts at the National Endowment for the Arts, called attention to the fact that older Americans and artists with disabilities are vital links to tradition and to our cultural heritage. He called for policymakers to "unlock the treasure of tradition" by eliminating regulatory impediments and disincentives to these citizens' full participation in passing on and cultivating our nation's living cultural heritage through the arts. He described the National Endowment for the Arts' role in this area as twofold:

• to strengthen our traditional arts heritage and preserve it for future generations, particularly through intergenerational learning; and

• to provide access to that pluralistic cultural heritage by the widest possible audience so that it may be appreciated.

Two principal efforts in this regard are apprenticeship programs in the folk and traditional arts and high visibility awards to master artists. With National Endowment for the Arts support, Statewide apprenticeship programs in over 30 States have supported over 3,000 apprenticeships in which senior, master folk artists pass on their skills to accomplished younger learners. The National Heritage Fellowship program since 1982 has awarded about a dozen awards annually to some of our nation's most important upholders of artistic tradition. The $10,000 fellowship rewards the senior artists for their contributions to our nation's artistic heritage and brings them and their traditions to broad public attention. A "culture of fear" of losing health care benefits from SSA deters many older artists from participating in these valuable programs. This major disincentive must be eradicated. Its elimination is a major policy issue for the National Endowment for the Arts, and the agency seeks to work with other agencies toward this end.

Deborah Boykin, Archivist and Cultural Planner for the Mississippi Band of Choctaw Indians, has had artists decline apprenticeship grants because of the fear Dan Sheehy just spoke about. Some of the exemplary artists are unable or fearful to apply. For example, the Mississippi Arts Council had one of the finest quilters in the State who applied for one of their grants. When pressured on whether she received SSI benefits, the quilter was never heard from again because of the fear of losing her health care benefits. Ms. Boykin also spoke about one of the Choctaw Indian basketmakers who was forced to turn down a grant because that person was in jeopardy of losing her benefits.

Stephanie Lemke, Folk Artist, Pisanica (the ancient Croatian art of decorating eggs with colorful, symbolic, painted designs), was brought up to be an independent soul and was told that she had many gifts to offer. She has Rheumatoid Arthritis and needs SSI to survive. As an artist, she would like to progress in her field. If she makes extra money, she has to report it. She received $28,000 for payments she suffered in a fall. She had to spend it all within a month to avoid losing her benefits. She spent it on accessibility items, i.e. car, computer, and a house. She feels undignified. Artists are special people and need more money to survive.

Regina Davis, Artist/Choreographer/Teacher, works as a deaf storyteller. She finds that it is hard to tell youth with disabilities that they can achieve their dreams when she cannot. She has applied three times for SSA benefits but each time was denied. She wants to work, but because of her chronic fatigue syndrome, she is unable to do so. She can only make so much. People with disabilities seek quality and equality in employment. All her life she has pledged her allegiance to her country and her flag. She would like to believe that her country would pledge allegiance to people with disabilities.

John Belluso, Acting Co-Director and Playwright in Residence for OTHER VOICES (Mark Taper Forum), is an emerging playwright. He stated that so much of what an artist does in his work is sporadic. Art itself is sporadic. Today, it is an exciting time for playwrights. Many playwrights with disabilities are struggling with these issues being discussed today, and we are telling our own stories and how we can share our experience through art.

Judy Heumann stated that when money and health care benefits are limited, many feel disempowered. Society has problems. Our values do not support the arts. We need to advocate for programs to support the arts.

Alana Wallace also added that people with disabilities do not know from day to day what problems they will face. This fear of not knowing may itself bring on health problems. The SSA reinStatement process needs to be addressed.

Ray Cebula, Senior Staff Attorney for the Disability Law Center in Boston, discussed the difference between sections 1619(a) and 1619(b) of the Social Security Act. These sections deal with the right to continued SSI benefits or Medicaid for SSI beneficiaries who work. He encouraged everyone to keep diaries when they discuss their benefits with SSA. His company works with people with disabilities so that their livelihood is not threatened and they can earn a living.

Judy Heumann closed the panel for questions and comments. She added that negative attitudes have a chilling effect on people with disabilities. There may be ways to go to SSA and have a meeting where these issues can be discussed.

Discussion Period

One participant said that what SSA needs to provide is a work incentive specialist who will guide people with disabilities through the melee of red tape. SSA staff then reported that SSA will be piloting a new employment support representative position in 32 locations around the country beginning in 2000. Its purpose will be specifically to work with people with disabilities to gain employment and earn a living.

Another participant said there is a problem in the way that SSA views awards and fellowships as "unearned income." In effect, they treat food and shelter expenses as if unnecessary. This sends exactly the wrong message to people who are trying to prepare for work.

The question was raised whether SSA could prorate money that beneficiaries who are artists earn and count it at an equal amount over the course of a year, like a salary. This would help even out the income over the year.

Paperwork to correct problems with individual PASS plans (plans for achieving self-support) is a slow process. We need to evaluate this system.

There is a need for dialogue between artists with disabilities and the Presidential Task Force. There are so many Band-Aids going over the problems artists are facing, and they are not healing or being solved. We as artists know what the problems are. We need to fix them.

Judy Heumann adjourned this panel and suggested to everyone to leave here more empowered and to grow from this dialogue.

Panel 2: Navigating Through the SSI Income and Resource Provisions

Ken Brown and Ray Marzoli, both Senior Policy Analysts at the Social Security Administration, provided a presentation on Navigating through the SSI Income and Resource Provisions, with a focus on Work Incentives. See Attachment 1.

Peter Kierpiec from SSA added that SSA must distinguish between a person who can work from one who cannot work. If a person makes over $700 a month, her income is considered Substantial Gainful Activity (SGA). He also mentioned that, under SSDI, Medicare eligibility begins after 24 months.

Discussion

Q1) What is the difference between wages and business losses in reference to SSI?

A) Wages are considered monthly receipts of income. Business losses are prorated over the taxable year. The monthly amount of loss derived can then used to offset any earned income received in that month.

Q2) What if you invest in stocks and bonds for the business?

A) If a business invests in stocks and bonds, they could be excluded as assets of the business under the exclusion of property essential to self-support. However, they must be used in the trade or business and not personal property.

Q3) How will SSA see the money earned over a two and one-half year period if the money comes from a foreign publishing firm?

A) It depends if the income is wages or self-employment income. Wages are counted in the month received. Annual self-employment income is divided over the number of months in the taxable year and the net monthly amount (earnings minus self-employment losses minus work expenses not previously considered) is counted as income.

Q4) In reference to one stop shops, where do they fit in the SSA process?

A) One-stop shops are under the auspices of the Department of Labor (DOL). SSA and DOL will be partners in one-stop shops. The systems are changing and DOL will be operating this area.

Additional comments:

• In reference to SSI and SSDI, 30% are dual eligibles. This is why we need Work Incentives Specialists.

• We need Work Incentive Specialists for both programs.

Panel 3: How Employment Trends Impact Disability and Other Benefits Across the Country

Pamela Walker, Media Artist and Arts Administrator, introduced the panel that focuses on how employment trends affect disability and other benefits across the country. She added that she was angry at the system, because it is so cumbersome. She feels that the system is patched with Band-Aids and no solutions to the problems are being found. The sporadic field of employment for artists with disabilities is unique. None of the artists present are getting rich off our benefits. We are living at a poverty level. We need to bring SSI and SSDI into the next century. Disabled people want to work but cannot support themselves without proper health care. Careers in the arts such as architects, designers, guides in museums, etc., could all accommodate people with disabilities. This area has not been tapped into yet. What happens when artists receive sporadic income? SSA caseworkers think that we are milking the system, when in reality we are not. If you try to work you may be treated worse by caseworkers than if you do not work. Artists have a lot to offer to society, but the barriers we face need to be removed.

Speed Davis, Entrepreneurial Specialist for the President’s Committee on Employment of People with Disabilities, suggested that unions get more involved. Manufacturers in the late 1970s recognize overseas competition. Consequently, downsizing occurred and outsourcing became the norm. Today there is a need for temporary employment and more contract employment. Telecommuting has become popular. However, people with disabilities need to be given the chance to work. Society seems to think that because someone has a disability, he cannot work. What they do not realize is that sometimes a person with a disability may be the best candidate for the job.

Charles Harles, Executive Director of the International Association of Business, Industry, and Rehabilitation, stated that his organization provides job training and placement for people with disabilities. The problems that we face here today are those careers that are considered by society to be non-traditional forms of employment. Society thinks that art is for therapy and enjoyment, and this is a non-traditional model of employment. The key issue is to find someone who will listen to artists with disabilities and the barriers they face.

Pamela Walker added that a shift is taking place in society, from a program of support to a program that encourages employment. Artists need to capitalize on this fact.

Bryon MacDonald, Community Advocate of the Center for Independent Living in Berkley/Oakland, California, began by providing a brief outline of the changes that have occurred since SSI began in 1974. He acknowledged the efforts of advocates present today (Sallie Rhodes and Bonnie O’Day) and the efforts in the Congress by Senator Jeffords and Kennedy to pass the Ticket to Work and Work Incentives Improvement Act (TWWIIA). This bill needs to be simplified so that every State and every person can understand what is being said. (Attachment 2 is a summary of the TWWIIA, provided by the Social Security Administration.) He added that sporadic, uneven earned income, which is the pattern with artists and many other self-employed workers, is an equally difficult issue with the designs and administration of the new Medicaid buy-ins emerging from the new Work Incentives Act. In some States, the State Medicaid buy-in initiatives for workers with disabilities, in conjunction with waivers and demonstration projects, have become alternative ways of addressing and solving some of the issues identified at the conference. SSA and others are hard at work to contribute to practical solutions here, with State governments and HCFA. Artists are just one category of a growing population in the new workforce and within the disability community--the self-employed. He followed up this overview by informing people that SSA will be holding public forums around the country to discuss how this Act can be used effectively to aid all people with disabilities.

Discussion

One participant said that artists with disabilities could be blackmailed into selling their work for less than it is worth, because of the fear of losing their benefits. Artists need to work this new system to their advantage. Many in the audience spoke of the fear of having their disability status reviewed by SSA. One person commented that she would rather commit suicide than go through a review process. Contact numbers were provided for the National Council on Independent Living (NCIL) (703-525-3406) and the National Association on Protection and Advocacy Systems (NAPAS) (202-408-9514).

Work Incentives and Pending Legislation

Ken McGill, Associate Commissioner for Employment Support Programs at the Social Security Administration, gave an overview of improvements to SSA provisions that will result from the TWWIIA. He also explained how the legislation will reform SSA’s processes and service delivery. (See Attachment 2 for a summary of the TWWIIA.)

Questions and Comments

Mr. McGill was asked whether SSA would be asking for public input on how best to implement the new legislation. He explained that SSA will use all types of media to obtain public input. He also said SSA will be looking for candidates, including people with disabilities, to serve on an advisory panel. The panel will provide oversight and advice to SSA on the best ways to implement the law.

Group Discussion: Recommendations for Removing Barriers

Bonnie O’Day, Senior Associate at Cherry Engineering Support Services, facilitated the discussion. She asked that the audience come up with concrete and specific suggestions on how to fix the problems that artists with disabilities face. Ken McGill promised that, in the meeting report, SSA would identify what type of action would be required to implement each suggestion.

In the limited time available at the meeting, the artists and others present were largely unable to discuss the recommendations offered by individuals. Thus, details and definitions were not always clear. Also, individual recommendations below may have enjoyed the support of all persons present, some persons, or possibly only the person who made the suggestion.

In the list below, items listed as "legislative" would require congressional action to implement. Items listed as "regulatory" could be implemented by SSA following standard Federal rulemaking procedures; they would require approval by the Office of Management and Budget (OMB) in addition to SSA. Items listed as "demonstration authority" could be implemented by SSA under existing statutory authority to test variations of current legal program requirements; these, too, would require approval by OMB. Items listed as "administrative" could be undertaken by SSA; if significant administrative costs would be involved, however, OMB approval would be required.

The recommendations offered included the following:

A. SSI: Artistic Income

1. Instead of counting sporadic arts income against the SSI benefit in the month received, average the income over the period of work, or over a quarter or a year. This will even out the amount of benefits received each month and will recognize that artistic work is done over a long period of time.

2. Create a non-profit organization to receive sporadic arts income to prevent it being counted by SSI.

3. Instead of counting sporadic arts income against the SSI benefit, create a special account for the artist with the money. Save the money for future income to the artist, like an IRA. Keep the full SSI benefit coming in the meantime.

B. SSI: Fellowships and Apprenticeships

C. SSI: Benefit and Exclusion Levels

1. Increase the Federal benefit rate (FBR) (the maximum monthly Federal SSI benefit level, $512 in 2000) to the poverty level ($696).

2. Increase the SSI resource (assets) limits from the current $2,000 for an individual and $3,000 for a couple to $5,000 for an individual and $8,000 for a couple.

D. SSI: Individual Retirement Accounts (IRAs)

E. SSI: Effects of Marriage

1. Make each member of an SSI-eligible couple eligible for his or her own Federal benefit rate (FBR) of $512, instead of only one-half of the FBR for an SSI-eligible couple ($769).

Regulatory:

2. Count considerably less of the income of an SSI-ineligible spouse when calculating the SSI-eligible spouse’s benefit.

F. SSDI: Earnings

G. SSDI: Trial Work Month Amount and SGA Level

1. Raise the minimum monthly amount of earnings that is counted against the 9-month trial work period from $200 to the SGA level ($700 for nonblind, $1,100 for blind).

2. Index the SGA level to inflation.

H. SSI and SSDI: Earnings

1. Exclude all earnings from arts activity from counting in SSI and SSDI benefit determinations.

2. Count net earnings rather than gross earnings.

Demonstration Project:

3. Create a demonstration project to test the effect of not counting earnings from arts activity in SSI and SSDI benefit determinations over a 5-year period.

Administrative:

4. Prevent more overpayments, and better explain to people how to avoid being overpaid.

I. SSI and SSDI: Reporting of Earnings to SSA

J. SSA: Public Information Activities

1. Provide good information on how the TWWIIA can help artists.

2. Provide better information on how artists can take advantage of current SSA rules.

3. Create a national clearinghouse for information on SSA rules to help educate consumers, VR counselors, and other agency staffs.

4. Conduct workshops on SSA rules for State Arts agencies and arts organizations.

5. Expose those who defraud or abuse artists with disabilities, or who defraud the government.

K. SSA: Service to Beneficiaries

1. Better train SSA field office staffs about rules affecting those who want to work, so they can better help beneficiaries.

2. Establish a system of knowledgeable service staff who can help beneficiaries who want to work to negotiate the system and understand the rules.

L. SSA: Input From Artists with Disabilities

1. Include disabled artists on advisory panels.

2. Create the means for more public input into Federal laws and SSA rules.

M. SSA: Appeals Process

Closing Remarks

Ken McGill thanked everyone for their suggestions and promised to make the recently passed TWWIIA legislation work for people with disabilities who have careers in the arts. The meeting adjourned at 4:30 p.m.