People involved in the Network
My research commenced with a series of in-depth interviews with Order Members, 6 of whom had current care needs (Group C), whilst another 6 were asked to anticipate their preferences if care needs arise in the future (Group A). I had 2 main research questions:
Also, I did interviews with people I considered to have 'expertise' in relation to long-term care and/or aspects of Buddhist organisations, and they constituted Group E. Group E included two people interviewed in San Francisco, a senior priest at the city's Zen Center (who talked about the increasing welfare and health provision they are needing to offer to people around the Center) and the volunteer co-ordinator at the Zen Hospice Project at Laguna Honda Hospital (we discussed aspects of spiritually sensitive care). Finally in this phase of the research 107 people from around the FWBO in the UK (including 62 Order Members) completed a 20 item questionnaire designed to explore attitudes to any possible Buddhist-based care service.
Group C included people with a range of conditions e.g. one participant had a number of age-related needs and lives in a care home, another has Multiple Sclerosis and lives in sheltered housing, another has a spinal injury and lives in a women's community, and so on. Financial and family support were variable, with some people having supportive adult children, home ownership and pensions from 'conventional' careers, whilst others had none of these. Support from mainstream services was also variable, with most people reporting some 'positive' input. Some staff attitudes and behaviour were criticised and one participant detailed the inadequate residential care given to 2 relatives who had Alzheimer's Disease. One instance of possible discrimination was cited,when one of the participants went to a disability benefits appeal panel and perceived the way the chair referred to her being an ordained Buddhist as "contemptuous". The participant living in a care home described having initially to explain his vegetarian diet (e.g. that this did not include fish) but was pleased that all staff now used his Buddhist name. One participant funded her care through the Direct Payments scheme and employed Buddhist friends as Personal Assistants (PAs). She considered this to be a very favourable set-up for people who have disability above a certain threshold; involvement with a large Buddhist Centre did seem beneficial here, as a key problem for many people with such funding is to find PAs, and 'Sangha networking' may reduce this.
'Informal' care was discussed in a number of contexts. One Order Member described outstanding input from his Sangha during a sudden but relatively prolonged period of acute ill-health, and there were other examples of regular and ongoing Sangha input in comparable situations. Somewhat in contrast a Centre chair commented that "we are good short-term", but that any ongoing visiting or support can fall to a small group of committed people and that, regrettably "I do know that I can't take on everybody" in this regard. Some-one commented that we are rarely faced with 'A Case of Dysentery' and may instead encounter 'A Case of Busyness', with ill/disabled people feeling that their friends have good intentions but also often have very full lives, thus tending to compromise prospects for regular contact.
The questionnaire (as well as the interviews) indicated general support for Buddhist-based care services, with a strong consensus that this would be a suitable field for Team-Based Right Livelihoods (TBRLs). High value was also placed on understanding of vegetarian diets and of meditation practice, with these (amongst other) features being believed likely to be characteristic of such services. It was less clear if people believed that funding and suitable organisational/professional skills would be available. One Order Member with a care background and extensive experience of TBRL (Padmasuri) acknowledged that FWBO work projects had sometimes started from a relatively low skills base in the past, but pointed to the significant expansion of the Order as making it likely that the necessary skills would be available. Many questionnaire participants wrote additional comments, and one theme in these was that high quality care tended to be expensive (one participant basing this on the current residential care of a relative with dementia, and her work as a GP).
In the light of the research I would make the following recommendations for people with an interest in care issues: