Maggie Dowling at the Center for PAS

Maggie Dowling's Story - Excerpted From Success Stories 2004: Consumer Perspectives published by NIDRR

Maggie Dowling is a long-time disability community activist and advocate. She has strong feelings about community involvement. "Policymakers and legislators often overlook the advantages of involving consumers when programs and policies are developed," Dowling said.

She had never been involved with a research or policy project that included highly respected researchers as well as people with disabilities. The NIDRR-supported Rehabilitation Research and Training Center for Personal Assistance Services (PAS), based at the University of California, San Francisco (UCSF), offered a unique opportunity to be a part of just such a team.

"At the center, I feel that I represent an important element to our work, the consumer's or stakeholder's views. I think it benefits everyone involved with the grant-the research teams and center's target audiences," she said.

Two years ago, Dowling discovered work being done at UCSF for the state regarding the In-Home Supportive Services Program and the Olmstead planning. She felt the work was of critical importance and quickly established a short-term volunteer relationship with UCSF researcher Robert Newcomer. Shortly thereafter, the NIDRR grant was proposed and awarded. Dowling was asked to join the UCSF team.

Dowling needed some level of personal assistance services to do the proposed job. Discussions ensued between the State Department of Vocational Rehabilitation (DVR), UCSF, and herself to determine what she would need in the way of job accommodations, computer needs, and training. An assessment was conducted and paid for by the DVR. The hardware, software, and the peripherals she needed were co-purchased by the DVR and UCSF.

Along with her basic knowledge of computer programs, Dowling used a reader and note-taker 10 hours a week to help her through the training period using standard software until she could use the new software. Her note-taker hours were reduced by half after the training component ended. UCSF picks up the cost for her note-taker. He is essential for accessing Web sites and taking notes during team meetings.

Training was an important component for Dowling, as her ability to review and produce more material became evident the more adept she became with her new software. She works at home to reduce commute time. It also offers flexibility to work day or night and enables Dowling to take her required time for breaks. Team meetings are conducted by telephone conference calls, enabling Dowling to communicate effectively from her home base.

Dowling's job has actually afforded employment to two people with disabilities. Besides Dowling, her note-taker, Chris Cotter, is a person with spina bifida. Chris has never been employed before this job; he had only done volunteer work. The job offers him new and different benefits: an income, the status of being employed, learning appropriate basic business communication skills, and most important, improving his computer skills, making him more employable in the future.

He has particularly enjoyed the increase of income and savored the benefits that come with a higher income. Dowling said, "It is my strong belief that if a person never experiences employment and its benefits, there is little incentive to work. Volunteer work is helpful to learn the limited basics, but paid work experience will entice people to learn a work ethic and pride in their abilities." Dowling feels that by working for UCSF she has helped a person who would not have sought employment otherwise. "Chris is living independently, something his family never anticipated happening," she said. "My UCSF job has given me the opportunity to encourage this turning point in the life of another person with a disability, proving that working in a consumer-friendly work environment offers compensation beyond imagination."

For herself, Dowling feels good working again and strengthened by her employer's interest in the appropriate accommodations to ensure maximum job performance. Her wish to find a job where she can telecommute has been realized and is a tremendous benefit to her independence. She said, "My employment benefits the disability community and especially those who have not worked as a team member of viable research. I think we can ultimately change employment concepts to encompass more people with disabilities and their specific work accommodation needs, maximizing their ability within the world of employment."

The PAS project focuses on the relationship between formal and informal personal assistance services (PAS) and caregiving support and the role of assistive technology in complementing PAS; investigates policies and programs, barriers, and new models for PAS in the home and community; and develops workplace PAS models that eliminate barriers to formal and informal PAS and assistive technology at work including recruitment, retention, and benefits. This story was submitted by Lewis Kraus.