St Louis

Monday 28 April 2008

We arrived at Post-Polio Health International (PHI) at 9.30am where we met with the Director, Joan Headley and Brian, a brand new staff member. I’m sure his first day proved to be as effective an orientation to PHI as it was for us. I set up the video and taped my interview with Joan as she discussed the service and the various research projects they have funded. PHI is an information resource for polio survivors, their families and the health care community. It actively promotes networking between survivors, professional communities and assistive equipment manufactures. PHI also publishes a quarterly newsletter, compiles the Post-Polio Directory listing post-polio health resources and polio support groups around the world, and maintains a website: www.post-polio.org that averages 50,000 hits per month.

Fortunately, Joan is also on the Board of Paraquad Inc., a Center for Independent Living: www.paraquad.org. As such, she was able to set up a meeting and tour of the facility for the afternoon. There are hundreds of Centers for Independent Living in the USA and approx 22 of those are in Missouri. We met with a number of key workers who each discussed their respective programs. Paraquad Inc. has been going for 37+ years and has an impressive range of services that are truly consumer driven. They employ around 120 staff with a mandatory 50% having some form of disability. Unlike ParaQuad Vic, they also have clients with sensory and cognitive problems and are also looking to expand into mental health. They have considered changing the name “Paraquad Inc.” but have such a significant reputation in the state, it’s difficult to ‘re-brand’.

We were very impressed with the layout of the facility, with every area being totally accessible to wheelchairs, assistive devices everywhere – including a really neat visual telephone system for deaf workers so they can sign their conversation. Even the kitchens were well thought out, with benches that you can wheel chairs under and an easy load dishwasher. Paraquad Inc. also employs 2 support workers to assist any staff members who may require it. Programs include: Accessible Housing; Advocacy; Assistive Technology Access; Benefits Planning Assistance and Outreach; Breast Healthcare Education Program; Career Options and Employment; College for Living; Consumer Directed Services (enabling people with physical disabilities to live in their own homes by training them to hire and manage personal attendants); Deaf and Hard of Hearing; DEAF Way Interpreting Services; Enabling Mobility Center; Independent Living; Information and Referral; Peer Consultation; Public Policy; Youth and Education; and my very favourite – Recycled Durable Medical Equipment. To quote from their brochure, this last one “is a one-stop clearinghouse providing information and resources, assistance identifying needed durable medical equipment, repair or restoration of donated medical equipment and the distribution of recycled or used equipment”. Equipment is donated, sanitized, repaired (if needed), and sold on for approx 25-30% of the cost of new equipment, including a 90 day guarantee. Depending on the persons’ income, they can make repayments as little as $5.00 per week until paid off – or if the individual is in dire straits or even homeless, Paraquad Inc. may decide to provide the equipment free of charge. Any profits go right back into the program.

During our discussions, we also learned that the Consumer Director Services included the capacity for people to nominate a family member (not the spouse) or friend to provide basic care. The rate of pay for this care is approx $8.00 per hour. 50% of consumers choose a family member or friend, and a survey of 100 of their 600+ clients revealed that satisfaction levels rated highest for family, then friends, then ‘strangers’ (professional support workers).

Paraquad Inc. also has a strong relationship with Washington University (Missouri campus) and has many health-related students assisting in areas such as occupational therapy and research. There was so much to see in the “Enabling Mobility Center” – again, quoting from the brochure – which “is a joint program between Paraquad and Washington University, providing information, training and community demonstrations on assistive technology to persons with disabilities, their families, independent living specialists, healthcare professionals, researchers, engineers, vendors and the general public.” Suffice to say we were mightily impressed!

Joan then offered to drive us around to see an area called “Forest Park” which is close by, but by then I was on information overload and needed a rest. Instead, I put down this report! However, we did go out for a lovely meal to finish the visit, which probably added another 3kg to my ever expanding waist-line!

Tomorrow we’re off again to visit Warm Springs, out of Atlanta, Georgia. So stay tuned . . .