In 2014, four persons from Hawaii, unbeknownst to each other, signed up as Super Advocates in the website of the ALS Residence Initiative (ALSRI). As Super Advocates, they shared the same dream: to establish a Residence in Hawaii.
Being in a small state, they all knew each other as people whose lives had been irrevocably touched by ALS. After living with ALS for 31 years, Divina Telan Robillard’s husband passed away in 2015. Robert Lundy, diagnosed in 2011, is a Marine veteran who lives in the Big Island of Hawaii. Ronaele Whittington’s daughter in California was diagnosed in 2010. Katherine O’Connor’s brother Brian has lived 14 out of 18 years with ALS in a nursing home.
In 2016, they formed an Ad Hoc committee to make their dream come true. One of them traveled to Massachusetts to visit the Saling ALS Residence and to meet their Maine counterparts. Another donated the money to hire an attorney to formalize the applications for incorporation and federal tax exemption.
In February 2017, the ALS Foundation of Hawaii was incorporated. Four months later in June 2017, it was granted 501(c)3 status. The four founders - Telan Robillard, Lundy, Whittington, and O’Connor - formed its first Board of Directors and officers, as President, Vice-President, Secretary, and Treasurer, respectively.
ALSRI is a nation-wide movement led by Barry Berman, CEO of the Chelsea Jewish Foundation which owns numerous long-term care homes, and Steve Saling, a pALS who helped design the first such Residence in the country, which also bears his name. Diagnosed with ALS at age 36, Saling anticipated the needs of his own future and met with fellow pALS in their living environments. After these meetings, he concluded that care in traditional nursing homes was inadequate for his needs – an observation that is more the rule than the exception among fellow pALS. Subsequently, at an ALSA conference, he met Berman, who himself, was looking for an alternative way to provide care for elders. Both men agreed that a Green House (GH) model of residential care had the perfect philosophical background to provide the kind of specialty care that pALS needed. In 2010, the Steve Saling ALS Residence opened in Chelsea, MA.
Green House Project is a non-profit that Dr. Bill Thomas, a longtime LTC reformist, established to implement his Eden Alternative philosophy of eldercare:
Focuses on growth and development of the elderly rather than decline and loss;
Residential base rather than institutional;
Small, rather than large, number of residents; and
Operates with a high staff to resident ratio.
There are now about 240 GH-certified homes nation-wide, none of which are in Hawaii
