All of us know the physical ravages and threats to a pALS’s emotional, familial, and spiritual integrity from ALS. These are the trauma that a pALS goes through as an individual and, if he is lucky enough to have one, his family as well. Since the 1800’s when Jean Marie Charcot first described the illness, there has been tremendous improvement in the understanding of the complexity of care required by pALS. This improvement has led to better treatment protocols, more appropriate home care technology, more supportive legislation, and other benefits. These dramatic changes helped lengthen the lifespan of pALS, and increase their number. While we are happy from the latter developments, they put into question the appropriateness of the traditional models of longterm care (LTC) today to care for pALS, as these facilities start to admit more and more pALS into their patient mix.
Don’t get me wrong. We in the ALS community are grateful for and appreciate the willingness of traditional LTC models to take on the care of pALS, care which is a tremendous undertaking for a family to fulfill in their homes. We need, however, to examine the aspects which make these traditional models of LTC facilities inadequate to provide the quality of life that pALS need. First of all, LTC facilities are generally directed towards the care of older patients with different needs: dementia with concurrent chronic illnesses such as post-stroke, cardiac concerns, diabetes, etc. Among other things, the Omnibus Budget Reconciliation Act of 1987, legislation to reform current LTC, mandated that the minimum training of nursing assistants - usually in the front-line of LTC - be fully grounded on care of elderly patients.
Persons with ALS are a different population from elders. While many pALS are elderly, a good number is also much younger. Although physically, disability as a result of ALS mimics that of older persons, its neuromuscular basis makes it different. In ALS, the mind remains intact. It is only humane to keep that intact mind engaged, valued, and involved in every aspect of care, including socialization, enjoying independence to the full extent possible, and, perhaps even continuing to be a productive member of society. The desire to facilitate the continued development of that intact mind and to keep that spirit hopeful has fueled the nationwide movement called the ALS Residence Initiative or ALSRI
ALS Residence Initiative (ALSRI)
Formally, ALSRI was started in 2012. Barry Borman was the CEO of the Chelsea Jewish Foundation, a non-profit which runs a number of nursing homes for the elderly in Chelsea, Massachusetts. Steve Saling was a landscape architect when he was diagnosed with ALS in 2006. Both men were not especially happy with the traditional models of elderly care that, ironically, Barry’s nursing homes were operating on. Barry was ready to break with tradition and looking for alternative models for LTC. He had just discharged his mom and taken her home from one of the nursing homes he was managing, for failure to thrive. He had earlier admitted her there after she suffered a stroke, which she needed to recover from.
Meanwhile, Steve visited a number of nursing homes, in anticipation of his future as a pALS, and found them wanting. As fate would have it, these two men met at an ALSA conference and began discussing ideas of a home that will provide quality care which valued independence, and a meaningful, purposeful, and dignified life for their patients. The Leonard Florence Center for Living (LFCL), an urban-style high-rise caring for a mix of seniors, pALS, and people with multiple sclerosis, was inaugurated in 2010 as a result of their meeting. The Steve Saling ALS Residence located in the second floor of LFCL was the first ALS home in the country. Last year, only the third ALS home in the US – the Dapper McDonald ALS Residence – opened its doors in the third floor of the building. What made the care at the LFCL, and in particular the two ALS residences under its roof, different from the traditional nursing home was that it was based on the Green House Project (GHP) concept of care.
The Green House Project
In the early 1990’s, Dr. Bill Thomas, a Harvard-educated activist, rocked the longterm care establishment by introducing the Eden Alternative. This philosophy attacks the age-old practice of institutionalizing elders in nursing homes providing minimum unenlightened care where they are objectified as mere care recipients, tasks to be completed, with little or no human interaction with the care providers. Thomas insisted that this kind of care made elders prone to helplessness, boredom, and loneliness.
To translate his Eden Alternative philosophy to brick and mortar terms, Thomas founded the Green House Project (GHP), a national non-profit organization dedicated to creating alternative living environments to the traditional nursing home. A typical GHP home is small, has a low staff to resident ratio, individual rooms for residents, a home-like interior and an atmosphere that encourages independence, humane interaction, and dignity. In 2005, the Robert Wood Johnson Foundation, one of the country’s biggest philanthropies, gave a 5-year $10M grant to establish GHP homes in all 50 states. At this time, there are more than 200+ GHP homes in 27 states. Unfortunately, there is none in Hawaii.
ALSRI: Nation-wide and in Hawaii
In their ALSRI website, Barry and Steve encourage others to start their own efforts at setting up an ALS Residence in their respective states. There are now three ALS Residences in the US: two in the LFCL in Chelsea, MA and one - the Steve Gleason House - in New Orleans, LA. There are groups working for ALS Residences in other states: Maine, Texas, Maryland, and Georgia.
Steve and Barry believe that there are two conditions needed to open an ALS: 1) attachment to a mission-driven, non-profit nursing facility to provide the care; and 2) supplemental funding to assure the care unique to the ALS residents. Since the nursing home will expect the residents to be on Medicaid, the supplemental funding will be responsible for providing those aspects of the patient’s care that are not covered by Medicaid, especially the state-of-the-art technology required to facilitate communication, ventilation, and mobility to ensure independence and quality of life of the residents.
Here in Hawaii, four individuals (Bob Lundy of the Big Island, Ronaele Whittington, Katherine O’Connor and I) joined the slowly growing number of people called Super Advocates, who believed in the goal of ALSRI. Bob is a veteran Marine who was diagnosed with ALS in 2011. Kathy’s brother, Brian has ALS and has been a patient in the Care Center of Hawaii for 12 years. Ronaele is a long distance caregiver to her daughter in California who has ALS. After having ALS for 31 years, my own husband, Britt, passed away from ALS complications in 2015. The common denominator among our lives is our very close and personal encounters with ALS.
Determined to go beyond being Super Advocates, we met to discuss plans to establish one in our state. Following the example of the other states, we decided to form a non-profit called the ALS Foundation of Hawaii. Currently, we are in the process of incorporating this entity and subsequently, applying for tax-exemption from the IRS to facilitate the growth of the multi-million dollars fund required to maintain a fully functioning ALS Residence.
Among other plans to disseminate information about this exciting effort, we will develop a website and other social media platforms. The process to get a non-profit status (501c3) takes around 6-8 months, but we are already planning the development of other aspects to make this organization viable, and getting the work done. Until our website is up, please keep checking this blogsite and leaving your comments. You can also email me at hialshale@gmail.com, a new personal address that I have dedicated only to HI ALS Residence matters.
We realize this is a bold effort and these are baby steps we are taking. We also know that many of us share this dream and would like to see these efforts succeed. We are under no illusion that making the dream come true is going to be easy. We are humble enough to understand that it is bigger than all of us combined. But we also know, that the aloha among us and our various communities – our ALS family as well as our state – is big-hearted and all-encompassing enough to make an ALS Residence in Hawaii a reality for all of us to use, enjoy, and be proud- NOT ONLY of being a part of this effort, but as citizens of the State of Hawaii - of owning this dream and making it come true!
