A phone conversation with Rosie Haywood of the UK's Parkinson Disease Society:
A few years ago Barbara Yacos had read about "PD Villages" being planned in
the UK. So I called London to find out more, introducing myself as a member
of this great net which also includes Simon Coles. Rosie Haywood explained
that the Society has had to take a different direction from the community
living approach that they'd been exploring. They have to follow the plan
of the 1991 national Community Care Act for Medical and Social Welfare. The
emphasis now is on helping people to maintain thier independence and to stay
in their own homes.
Their facility at Walsall was originally meant for independent people, but
it has since been made into a "sheltered accommodation" with "wardened
care". There are six rooms or "flatlets" per wing with a "warden" on call
for each wing. She said it would be possible to have a wing for Yuppers
(young-onset).
At Inverness they've converted a wing of a hospital ("it's much lovelier
than it sounds") into two-bedroom apartments. Families can stay there (even
bringing their dogs!) for short-term visits. Often this is done while the
person with Parkinson's is receiving physiotherapy. The apartments are also
set up to shared, similar to what we in the U.S. call "time-share condos".
Families come for respite care and for vacations. It sounds beautiful --
nestled at the foot of the Scottish Highlands. Rosie asked if I'd like to
come visit -- Yes!
The Parkinson's Disease Society sparks ideas like those, raises money, gets
them on their feet, then moves on to other projects. Rosie referred to
their being "campaigners". For example, the Inverness facility is a joint
effort with a government agency called the Health Trust. After three years,
the Trust will take over managing it. The Society has to have an eye for
projects that will survive in a competitive market. The "yoga holiday"
they're organizing now is such a project.
There's much less government support now. Private giving seems to be
decreasing as more people find themselves drawn into playing the lottery!
leading of course to worthy causes scrambling for those promised lottery
windfalls: the opera vs. the homeless.
So the "PD Villages" don't exist -- yet. Something comparable in the UK is
a program called the Leonard Cheshire Homes. A veteran returning from WWII
made it his life's work to buy huge old houses and "do them up" -- refurbish
and remodel them for "mixed" groups of people with disabilities. At least
one of them is for young people.
To our UK members: can you expand on what this pleasant phone call
introduced to us? To everyone: any creative ideas on housing alternatives?
It would be such a relief, delight and comfort to have some options.
Mary Yost, 47, diagnosed 1990, spoiled: I live in Los Angeles and WALK to work
