Householder Model for Community Living (previously called Nest Model)
Drafted by Betsy Neuville after discussions with Arjun Basu, Indrani Basu, Geeta Mondol, Ranjana Chakraborty, and Manisha Bhattacharya
9 June 2024, Updated September 29024
Summary
This paper sketches out a potential residential service design for adults with developmental disabilities who will likely need significant assistance and support for their lifetimes. The design is intended to be small-scale, person centered, driven by the desired lifestyles of the people served, and will incorporate families as essential partners.
Background
Across India, some families struggle to envision the futures of their adult sons and daughters with developmental disabilities who will likely require support for the rest of their lives. For others, the future is obvious - committed extended family made up of siblings and cousins, and other extended family mean there is a strong means of practical and communal support. When the answer is not so clear, options seem limited, and the most evident options are one of hundreds, probably thousands, of residential services which have sprung up across the country. Some are run by families who have formed a corporate body, others are designed and operated solely by professionals. Some are affordable to middle class Indian families, others are astronomically expensive, affordable to few. Nor surprisingly, the least desirable options are available to the poorer strata, and these are the government-run and charitable shelter homes, across the country.
This model has been developed as a different sort of option which may be a perfect match for some people with disabilities, and some families. It relies on collaboration, partnership between families and professionals, and a commitment to person-driven lifestyles and community inclusion in all life areas –living, work, relationships, spirituality, and civic life. A group of people including Indrani Basu, Arjun Basu, and several staff from Keystone Institute India have been discussing and fleshing out this idea over the past months. Keystone’s interest is in supporting the development of person-center, built-to-last, workable models that may meet the needs of some people with disability and their families and are consistent with the person-centered values. Indrani and Arjun are committed parents and leaders in the field, who are concerned about the welfare of all people with developmental disabilities in India, and specifically in the future of their own son, Nano.
Basic Model
The householder model is driven by a few families rooted in the same geographical area (Kolkata) who have property in the form of normative living space – apartment, flat, or free-standing home, who are able to make this home the primary residence of their adult family members. The family member (householder) could, under trust, become the owner of this living space, with the asset protected for their welfare. A person-centered planning process would be conducted to envision the future in this place, with the focus person fully involved. Support needs would be identified, including well-trained professional staff, possible housemates or flat mates, as well as employment services, and safety
security. There may well be other people invited to share the household, and these could be others with disability, also in need to assistance to live fully. The family and the householder keep all rights to property and who lives there, with the understanding that they may support an additional number of people with disability under one household, with the householder as the main recipient. The numbers must remain of normative household size to retain a typical lifestyle, provide a high degree of individualization, and promote community acceptance.
The households will be a network of just a few, joined by common commitment to full, rich, included adult lives for those who live there. Families will relate primarily as family members, and will rely on a separate, carefully constructed organization to provide support, still under their ultimate control, but operating as independently as possible.
Supports, Inc
Direct services to each household will be provided by Supports, Inc (this is a fictional name which needs a new one!). The responsibilities of Supports Inc are to
1. Provide highly trained, trustworthy direct support professionals to provide day to day support as indicated by the person-centered plan
2. Recruit, hire, supervise, evaluate, and train a team of such individuals to know each householder and housemate well, and meet their daily needs for accompaniment, teaching, companionship, safety, and assistance.
3. Schedule DSP staff as per the above requirements
4. Provide 24/7 on-call management support for staffing and individual needs.
5. Maintain excellent relationships with each person served and their families
6. Provide for health care, vocational or meaningful day support, and valued roles in all life spheres, with the collaboration of the householders and the families.
Supports Inc must be developed in a way that families and householders are listened to, respected and remain the first customer. There are currently some service organizations which provide in-home support to dependent elderly people, but the quality has been said to be low, and the profit motive high. Supports, Inc must reverse this equation and make the quality high and have a no profit motive. At the same time, they must recruit and hire support staff at a dignified wage, suitable for the expectation of community engagement, valued roles, and treating all with respect and dignity.
Gover nance
Many questions remain about governance. It is essential that families and householders remain in control of the formation and selection of Supports, Inc. as the management company. Should Supports, Inc fail to perform in the expected manner, families retain the decision to form a new company or select another. It is also essential that ancestral property rights must be retained by families under trust.
Values
This project must be government by core values which drive all activities. These values may include:
1. All people, including people with disabilities, should have access to the universal “Good Things of Life”, including home, friends, family, community membership, financial stability, being respected by others, and experiencing normative freedom and autonomy within the society. We recognize that it is having valued social roles which bring this well-being to all people.
2. All that we do will contribute to people with disabilities having valued and authentic roles within Indian society and their local communities. Implicit in this belief is the recognition that segregation and congregation of marginalized people inevitably leads to poor treatment, and we will assure that our shared efforts are always moving towards inclusion in normative, everyday life, and away from segregation and separation by disability. In particular, we believe in the natural authority of families, as they know their family member and deeply identify with them in ways that professionals and caregivers rarely can.
3. We believe that all our efforts should contribute towards an improved quality of life for all people, and that the welfare of human society as a whole depends upon the well-being of each member.
4. All that we do and say should portray a positive interpretation of people with disability, through our language, behavior, media, and action.
5. We believe we have an obligation to keep our promises.
| Page
.
6. We believe that all people, including those with significant impact of disability, have enormous lifelong potential to grow, learn and achieve and bring these positive expectations to all our shared work.
7. We recognize that many people with disability will require some support across the lifespan, and such support must be flexible, responsive, and adaptable over time.
This small paper is a work in progress and needs to be expended and enfleshed.
Update 24 September 2024:
Arjun, Indrani and Betsy met to further work on this idea. Since our last planning meet, the Householder Model has been shared with a number of people, especially families, and was met with both interest and optimism. This means the idea has face validity and is encouraging.
Several expansions of our thinking were formed as follows:
1. The selection or creation of “Supports, Inc” as the staffing and management organization was discussed. Options would include interviewing specific existing organizations to describe the program and requirements. Certainly, there are many such organizations in Kolkata which may be willing and have the scope but may not have the values fit that would be required. In other words, the creation of services to support full and meaningful lives for individual people which would endure for life requires a clear commitment to values such as community integration, individualized support, empowered staff, and the full citizenship of people with disability.
2. Arjun developed a comprehensive workplan for the development of Householder, which is a good bit of work, and very helpful.
3. We discussed the possibility of a three -member consortium – the Basu family (overall leadership), Keystone (technical support esp. for dsp training curriculum, HR support in the form of position descriptions etc,) and Supports Inc. (for management, staff preparation, scheduling and 24-hour support)
4. We also discussed safeguards. We assume that the Basu family’s experience will cause other families to join in other small households. How can we assure (as much as possible) the longterm dependability of high-quality support even beyond the life span of parents? One important safeguard is a “membership” model where the program itself is governed by trusted allies who can be relied to keep the program on track, to press the rest button on Supports Inc. if needed, and to safeguard the long-term welfare of the people served. We can envision trusted organizations such as AFA and Keystone to fill membership roles and know also that trusted families may be a part of this as well. All these structural issues need to be worked out and are part of the strategic plan presented by Arjun.
5. The Membership would be a new circle in our diagram above, providing background support to the Family Board, and even intervention in case of problems.