IT'S INCREDIBLE WHAT HE HAS LOBBIED FOR AND WON!
IT'S A VERY HARD LOOK AT WHAT WE PALS ARE FACING. HE'S DOING A GREAT THING BUT I BROKE DOWN WATCHING THE VIDEO. IT'S NOT REALITY IT'S ACTUALITY.
Most of you probably know that I have been working on two projects - one in MA and one in GA - to create a ALS group home that will support people on a vent. Not only support a vented person, but provide the kind of residential living environment that makes the decision to go on a vent a no-brainer.The MA project has a big head start in that I found people who shared my dream who were well on the way to making it happen. Barry Berman is an out-of-the-box nursing home director who realized that, as good as his facilities are, the needs of a younger, disabled person will NEVER be met in a traditional senior center. With enormous support from the MA-ALSA, this project is 80% financed, architectural plans near completion, land owned, permitted, and ready to break ground this year.There will be two ALS residences in an urban mid-rise condo building. Each house will have 10 private bedrooms, each with their own private bathroom, organized around a central living room and accessible kitchen. Each resident will have the option to cook for themselves or have a live-in chef cook-to-order. We are teaming with UMASS-Lowell engineering so that each resident will have a custom fit communication and mobility package created that will offer the latest technology (Eye-gaze, Tobii) so that the pALS can regulate the climate controls within the bedroom, open and close doors, call the elevator, select the desired floor, etc, all from the computer on their wheelchair. Each room will have a track hoist system that will provide access to 100% of the bedroom and bathroom. Oxygen will be piped into every room for those that need it. Most importantly, when necessary to go on a vent, you don't get kicked out. All 20 rooms will have vent support provided.It doesn't stop there. Upon exiting the elevator on the ground floor, residents will spill onto "Main Street", not a lobby. There will be coffee shops and cafés, courtyards and gardens, and transportation available upon request to go to downtown Boston, the Boston Common, or any other desired destination. Friends and family are encouraged to visit and will be welcome to stay over for a night or two or three...So far, the facility itself is paid for. There is another $5 million needed for the ALS upgrades. To this end, there is a major gifts campaign underway to cover these costs. The video linked below is to be used in this fund-raising effort. As you will see, I am honored to help in this endeavor by using my past experience as an architect to consult with the project architect to make sure our unique needs are uniquely addressed.Hope comes from many places. Never give in to fear because good things are happening all the time. I like something Barry says - our first goal is to get this residence built; our second goal is to not need it anymore and close it down.Massachusetts, almost done. Next up, Georgia.