Earlier this year Quest (vol. 6, no. 2) posed this question: Why are only 29 percent of adults with disabilities of working age employed?

The economy is strong and unemployment rates are at a record low ... antidiscrimination laws are in place ... education and technology mean more jobs that don't require physical strength. Yet employment for people with disabilities has declined since 1986 when 34 percent were working. What's the explanation?

We asked for your opinions and experiences with the workplace. We wanted to know what you think are the major reasons more people with disabilities aren't working, and what keeps you in or out of the work force.

While communications technology enables many people with disabilities to work, they still face the problem of earning enough to pay their medical expenses and give up government benefits.

A total of 76 Quest readers answered the survey, 45 of them now working, and 28 who'd like to work full time or part time.

Though only five respondents said they didn't want to work, more than that number answered the question, "Why don't you want to work?" The top reason given was "fear of losing disability income" (Supplemental Security Income or Social Security Disability Insurance). In second place were "fear of losing health benefits" (Medicare or Medicaid) and "my disability is too severe."

We asked those who want to be working but aren't to rank the reasons they aren't employed. The top listed reason was "I'm still looking for a job," followed by "any job I could get wouldn't pay enough to cover living expenses" and "I can't afford to give up my disability income."

Among changes in public policy that would make it easier for people with neuromuscular diseases to be employed, top ratings went to:

• Easier and risk-free procedures for reobtaining Medicare or Medicaid coverage when no longer able to work
  
  
• Opportunity for employed people with disabilities to buy into Medicare/Medicaid health coverage
  
  
• Extended Medicare/Medicaid coverage for a longer period after returning to work
  
  
• Higher tax credits or deductions for work-related expenses such as assistive devices and/or technology, transportation and personal attendant services
  
  
• Better information and advice on current employment support programs such as Vocational Rehabilitation or job training
  
  
• Better counseling and placement through VR or other public or private agencies
  
  
• Restructured system with incentives for getting off SSI or SSDI, not for staying on
  
  
• More educational assistance so people with disabilities can get higher-paying jobs and not need government benefits

The most strongly favored initiatives in the private sector were job sharing and part-time work, and more knowledgeable company personnel representatives.

The survey included one open-ended question: "Why do you think the unemployment rate for people with disabilities is still so high?" When answers were grouped into broad categories, the largest number of people said the causes stemmed from employers' fear and ignorance about hiring workers with disabilities. The second highest category was discrimination against applicants with disabilities; and the third was that people with disabilities fear losing benefits. 

PROGRESS REPORT

In Quest's survey, loss of health benefits tied to Social Security disability income was the second highest reason given for why people don't want to work. When asked how Medicare and Medicaid policies could better serve the goal of getting people with disabilities employed, respondents strongly supported all three answers: easier procedures for reobtaining Medicare, opportunity to buy into government health coverage and extended coverage after returning to work.

A major step toward solving the problem of health insurance coverage for employees with disabilities may have been taken by Congress this summer. On June 16, the Senate passed 99-0 the Work Incentives Improvement Act, which the president has strongly endorsed. As of late July, it had 225 cosponsors in the House of Representatives and had been referred to the Ways and Means Committee, which hadn't yet scheduled a hearing.

This bill, if it becomes law in the form passed by the Senate, would enable many people with disabilities to retain Medicare health benefits after becoming employed. Now, those benefits are lost when a person earns over $700 a month.

Being able to hold onto Medicare coverage would benefit the self-employed and those who work for small businesses that don't provide full health insurance. It would also encourage smaller businesses to hire disabled applicants, rather than to reject them out of fear of excessive health insurance costs.

Medicare is important to workers with disabilities whose medical costs can be very high. Medicare covers some disability-related expenses that private insurance won't cover, such as personal assistant services. Assistance with such costs would make working more attractive for those who fear that their earnings wouldn't cover all their expenses. The new bill would also eliminate delays in returning to Medicare coverage when a person leaves the work force.

Another provision of the new bill would give states the option of allowing low-income workers with disabilities to buy into the Medicaid program for health care coverage. The cost would be set by each state and would rise with the person's income. The bill also establishes a new grant system for job training and placement programs for people with disabilities.

RESOURCES

Quest's survey asked about the effectiveness of existing government programs that are supposed to help people with disabilities find employment. The responses indicate that most readers aren't even aware of what programs exist, and very few have benefited from them.

People with neuromuscular disorders often find job placement programs ineffective, with too few incentives for giving up disability income.

Only four people thought the government didn't need to provide supports; 40 said that more government supports for employment of people with disabilities would be cost-effective by enabling people to contribute to the economy. Thirty agreed that there are many useful incentive programs but individuals don't understand how to use them effectively or fear that participation would jeopardize their health insurance and income benefits.

The survey listed 25 existing employment incentive programs and asked whether readers were familiar with them or had used them. The most familiar were Vocational Rehabilitation, a federally funded state-run agency that's mandated to help people with disabilities find jobs; and affirmative action, a concept that encourages hiring of minorities and women, including people with disabilities.

However, success with VR wasn't impressive. While 33 readers had used the service in their job searches, only 15 were actually hired, and only 16 rated the service good or excellent. Other public or private employment agencies were rated about the same.

Of the 25 federal, state and private employee incentive programs listed, 18 were rated "never heard of" by more than half the respondents. Not one had been "used successfully" by more than half the respondents.

It's likely that schools and VR personnel have failed to inform job seekers about these programs. For those who'd like to investigate on their own, here are some of the most significant programs and other sources of employment ideas:

Alliance for Technology Access Centers
This nationwide network of community-based resource centers provides information and support to people with disabilities on technology use, including job training.
Telephone: (800) 455-7970;
(415) 455-4575
E-mail: atainfo@ataccess.org
Internet: www.ataccess.org

"Careers and the Disabled" magazine
(516) 421-9421
info@eop.com

"Employment in the Mainstream"
Quarterly magazine
(301) 654-2400

Job Accommodation Network (JAN)
(800) 526-7234; (800) 232-9675
http://janweb.icdi.wvu.edu
JAN is an information and referral service on job accommodations for people with disabilities; on the employment provisions of the Americans with Disabilities Act; and on resources for technical assistance, funding, education and services related to employment.

Plan for Achieving Self-Support (PASS)
This is a Social Security Administration program that allows a person who receives SSDI to set aside income or resources for a work goal such as education, vocational training or starting a business. An SSDI recipient can work with an SSA representative (see below) to create an individual PASS.

Presidential Task Force on Employment of Adults With Disabilities
(202) 219-6081
ptfead@dol.gov
www.dol.gov/dol/_sec/public/programs/ptfead/main.htm
This panel was appointed in March 1998 and charged with creating a coordinated national policy to increase employment in the disability population. Reports of some task force hearings, which analyze the failures and successes of federal programs, are available.

President's Committee on Employment of People with Disabilities
(202) 376-6200; (800) 232-9675
www.pcepd.gov
This longstanding body is charged with improving access and opportunity to employment for Americans with disabilities. Its "Think Ability" educational kit is published annually; the 1999 edition contains helpful information and resources on attitudinal barriers, resumes, accommodations, job interviews, the ADA and technology. Among the committee's programs are the Business Leadership Network, Youth Leadership Forum for Students With Disabilities, High School/High Tech, the Workforce Recruitment Program for College Students With Disabilities and Cultural Diversity Initiative. Also see Job Accommodation Network.

Social Security Administration
(800) 772-1213, or check local phone book for the nearest regional office
www.ssa.gov
SSA administers the SSDI and SSI disability income programs. It has several publications about employment for people with disabilities. Its work incentive programs include PASS (see above), Section 1619 Work Incentives, Trial Work Period and Earned Income Exclusion.

Quest frequently publishes articles about employment-related issues that contain success stories and resources for information. Past articles are:

• Vol. 1, no. 1, 1994: "Getting By With a Little Help From Your Personal Assistant"
  
  
• Vol. 2, no. 3, 1995: "Technology Transforms the Workplace"
  
  
• Vol. 3, no. 1, 1996: "The Job of Interviewing"
  
  
• Vol. 4, no. 5, 1997: "Within Reason: Reasonable Accommodations Are Attainable When Employer and Employee Work Together"
  
  
• Vol. 5, no. 1, 1998: "Doing It Yourself: Is a Home-Based Business for You?"
  
  
• Vol. 5, no. 6, 1998: "You Can Take It With You: Get the Most Out of Your Employee Benefits"