Options3

Supported Living in a Licensed Setting: What are the Possibilities?

Is it possible to create a licensed living arrangement that is consistent with some key principles and values underlying supported living?

 

Presentation at Supported Life Conference, Sacramento, California

October 10-11, 1996

 

At the House Warming, March 1996

Left to right: Joe, Nathan, Michelle, Lisa, James & Risa

 

Abstract

Early on, we concluded, as a group, that we preferred principles of supported living to those that have traditionally been found in licensed settings. But, the regional center wanted the arrangement to be licensed. So, we set out to reflect many of the newer values in the living arrangement created. Here are some of the values or principles at work: (1) individual PATH (Planning Alternative Tomorrows with Hope) exercises, along with

Essential Lifestyle Planning; (2) an extensive search for a place to live that would best meet the needs and desires of the three; (3) separation of housing from services; (4) individual lease agreements with sharing utilities; (5) those served (with Personal Advocates, as needed) employing their helpers; (6) a live-in housemate, relief housemate, and drop-in companions; and (7) a pattern of services and supports that would enable James, Joe, and Risa to have lives that made sense to them and to their families and close friends. Options3, Inc., the instrumentality through which services are currently coordinated, sees itself as a non-profit society of family and friends who have agreed to stand by the three adults, James, Joe, and Risa, wherever their lives may take them -- so long as the person stays in or around Napa, California. The agency has a secondary educational purpose, and the support team hopes to share what they have learned about self-directed teams and the creation of personalized living arrangements. A Manual is under development.

How did this arrangement get started? -- James, Joe, and Risa moved into their home in January 1996. A year earlier, the possibility that James, Joe, and Risa might live together first entered the minds of members of their support team. James, then 20 years old, had been living in a small family care home (Level 4F) since the age of 12. James was nearing the end of his schooling, and would be moving on to a different living arrangement ("bigger and better things"?), because his foster home was committed to serving children. It seemed to some of us that James' needs and preferences would be tough to meet in a conventional living arrangement, and that he shared certain interests with Joe (and, as we learned later, Risa). With a talented, caring, and energetic family, others saw merit in teaming up with them if the opportunity presented itself. Joe was living in an ICF/DD-H, a Medi-Cal funded group home for six adults, and had not been doing well for some time (allergies; behavior problems; appearing depressed). His eyes continued to light up when he saw Risa (or heard her name). A couple of years earlier, Joe and Risa had begun to spend time together. Risa is the first unpaid person outside of his family in whom Joe showed great interest. Risa lived in a Level 4D group home. Members of Joe's family had a chance to get to know Risa better, helping her and Joe go out to dinner; take in movies; and spend time together on vacations in Tahoe. It had been known for some time that Risa eventually wanted "to have her own place," away from the group home where she lived. Bill Allen had interviewed her a year or so earlier, as part of a project involving use of person-centered planning techniques.

 

How did we learn what was needed and wanted? -- Last March, Claudia Bolton returned from a workshop in Oregon where she learned about PATH (Planning Alternative Tomorrows with Hope) from John O'Brien, Marsha Forrest, and Jack Pierpoint. The group asked Claudia and Bill if they would help out facilitating (and recording) a series of meetings focusing on each life: James, Joe, and Risa. Claudia suggested (and the group adopted) the position that each exercise would be a way to see how the lives of these three young people might continue to intersect. (They had been playing softball together each year -- indeed, typically covering right field as a threesome, with the assistance of friends and family.) Subsequent to the three PATH exercises (one for each focus person), everyone agreed that it might be wise to pursue an arrangement wherein James, Joe, and Risa would live together, with support. Subsequently, small groups went through Essential Lifestyle Planning exercises for each person, which gave everyone a shared understanding of what each focus person wanted and needed in their lives.

 

In building your team, what were some early decisions? -- The group spent a lot of time on two matters:

Through a series of conversations, the support team came to a consensus that the group preferred supported living to the usual assumptions underlying traditional (licensed) residential services. We especially liked (1) the house being owned (or controlled) by James, Joe, and Risa; (2) James, Joe, and Risa selecting (and directing, with the help of Personal Advocates, as needed) their paid helpers; and (3) services being designed to support their preferred lifestyles. The support team has also been sensitive to health and safety needs, and early on agreed to adhere to fire/life/safety norms typical of licensed homes, whether licensed or not. This meant replacing a window with a fourth door to the outside, installation of additional smoke detectors, and having fire-fighting equipment close at hand. Members of the group continue to be concerned that licensing forces residents to never be alone, and feel that this limits growth toward greater independence and self-direction and adds unnecessary expense. Excessive paperwork is also a concern, but we were able to negotiate a dispensation from the usual evaluative norms, described below. For pragmatic reasons, we decided to remain open to the home being licensed or non-licensed, since we felt that North Bay Regional Center might have a preference. (It turns out that they had a preference that the home to be licensed.)

Some members of the support team viewed "place" as important -- either for the well-being of their loved ones, or in hopes of assuring stability and continuity. Initially, Roger and John explored with the Director of the City of Napa Housing Authority the possibility of accessing the Section 8 Rental Assistance Program. He could not support use of the shared housing option within the Section 8 program, which would be logical for three, unrelated, low-income adults living together. We toyed with the duplex idea, with one person (on paper) the "full-time attendant for another," which might have worked for two of the three, but not all three. We knew of lifestyle preferences that needed to be attended to, whether the dwelling were owned or rented: James's family was interested in a companion dog. James and Joe liked to run and ride bicycles. James and Risa enjoyed gardening and working in the yard. Risa's cerebral palsy pointed to the desirability of railings and minimum changes in grade into (or within) the home. Estate planning and the market for real estate were also factors in the ultimate decision to assist James, Joe, and Risa to find a place to live that would be purchased by 'interested investors' who would rent to them long-term.

 

Who's on the support team? -- We think of paid helpers and family and friends actively involved in helping James, Joe, and Risa as their support team. Full-time, paid helpers are Nathan, Principal Housemate; Lisa, Relief Housemate; Michelle, Companion. Others work part-time and fill-in as needed. Other members of the support team are: Roger & Deb (James' parents); Nadine & Iris (Joe's mother and aunt); John (Joe's father and James' foster father); Patty (James' foster mother and Joe's step-mother); and Marion (Risa's former care-provider). As a self-managing team, each has certain roles and responsibilities. In addition to their usual familial relationships, here's what the non-paid people do:

James, Joe, and Risa -- Risa declined being President of the corporation, but consented to be Vice-President. The three provide direction to the work of everyone else, since we adhere to a philosophy of helping each person pursue their preferred lifestyle.

Roger -- Secretary-Treasurer of the corporation; handles financial affairs (budget; checks; billing; accounting; financial reports; etc.) and helps with house maintenance. Provides leadership in the area of fund-raising. (The support team would like James, Joe, and Risa to have a mini-van, computer and other assistive devices to improve communication. Other items -- e.g., a hot tub -- are also on the wish list.)

Deb -- As a registered nurse, provides leadership in meeting health needs. Involved in training and systems to assure adequate help with medications, etc.

Nadine -- As Managing Partner of The Willis Drive Partnership, landlords for the house where James, Joe, and Risa now live, she signs lease agreements, collects rents, pays the mortgage, insurance, and property taxes, distributes net income to the owners, keeps the books, and provides an accounting for each owner at least annually.

Iris -- Plays a variety of roles, depending on needs and requests for her expertise. Involved in household maintenance; maintenance of "client records;" Recording Secretary for the corporation (Minutes); facilitates some meetings; etc.

John -- As Support Services Coordinator, acts as point person in working with paid helpers, residents, and families to provide good quality, responsive, coordinated services.

Patty -- Meets with paid helpers to help organize and encourage life patterns responsive to the needs and interests of each person. Works with Marion and others to provide education, training, and support.

Marion -- Provides leadership in the area of training, so that paid helpers have the knowledge and skill expected by persons who work in community-care licensed environments.


What's in the name? -- Licensed homes must have names. What better name than James, Joe, and Risa's. This name is on the community-care license. Asked where are you going?, Joe's dad usually replies to Joe's house, to distinguish it from Joe's Bar and Grill or Downtown Joe's, two local watering holes. Options3 (or 3), Inc. (sometimes referred to as OPTIONS CUBED, INC.) is the name of a new non-profit corporation, vendored through North Bay Regional Center, our valued funding partner, to deliver services and supports to James, Joe, and Risa. We have explored use of two slogans for the agency:


How's the housing handled? -- Six people (Nadine, Iris, John, Patty, Roger, and Deb) are partners in The Willis Drive Partnership. A formal partnership agreement was hammered out; one partner (Nadine) serves as Managing Partner. Each partner has a voice in partnership decisions, which are made by consensus (i.e., unanimity). The Partnership owns the 1,500 square foot, 4 bedroom, 2 bath home where James, Joe, and Risa live. James, Joe, and Risa have their own bedrooms. The Partnership charges $1,150 per month for use of the house, which is market rent.


How are basic living expenses handled? -- James, Joe, and Risa pay $275 per month rent to The Willis Drive Partnership, and share most utilities (PG&E; garbage; basic cable and telephone services), which have been divvied up and are in their names. For example, Joe Shea's name is on the PG&E bill. James Phillip's name is on the garbage bill. Risa, who loves to talk on the telephone, has her name on the telephone bill. Options3, Inc., pays $325 in rent each month on behalf of the Principal Housemate, who has the master bedroom and shares equally (i.e., one-quarter) in the utilities. Representative Payees forward SSA and SSI checks to the Treasurer of Options3, Inc., who deposits these in the Options3, Inc., bank account. The Treasurer then writes checks for $490 each to James, Joe, and Risa, who (with assistance) deposit these checks in their checking accounts. James, Joe, and Risa are expected (with help) to manage their money. The $490 is intended to be used as follows:

Rent $275

Utilities (1/4 of estimated total) $$75

Personal & incidental expenses, including eating out,activities, and the like ($90 P&I; $50 from Options3, Inc.) 140

Total $490

The support team decided -- in the interest of encouraging family style main meals -- to budget (and place responsibility for) food and ordinary household expenses with the Principal (and Relief) Housemates. Paid helpers are expected to use their own cars in the course of their work, and are reimbursed $0.25 per mile. On Monday morning, the Relief Housemate takes James and Joe to their day program. On the other weekdays, this task falls to the Principal Housemate. (Risa is picked up by Van-Go, and is transported by the paratransit agency to her program in Calistoga.)


How are support services handled? -- Being a community-care licensed home, with a designated service level of 4G, one person must be on-duty whenever James, Joe, or Risa is not at school, job, or day program, and a second person must be on-duty about 50 hours per week. We 'networked,' sent out flyers, talked up the project, and put ads in the paper. After some screening, James, Joe, and Risa (along with key members of their support team) interviewed candidates. At this time, there are three positions:

No one was hired in response to the help-wanted ads. Members of the support team knew all but one of the paid helpers. At least one paid helper knew and had worked with James, Joe, and Risa in other residential, school, or work settings. The team may add one or more [paid, if necessary] volunteers who are willing and able to share a passionate interest in an activity of great interest to James, Joe, or Risa. Examples: a long-distance runner (Joe); a person who enjoys riding horses (James).


What about measuring success? Do you adhere to the usual documentation requirements found in Level 4 homes? -- Some things are documented because not only rules require it, but the support team feels that it is important to do so. This includes helping with drug administration; notes and papers from visits (or telephone conversations) with health care professionals; and accounting for the $490 each month (helped by the fact that many expenditures are by personal checks). We have not wanted to "keep data" about behavior problems, but have done so when it is important for understanding. Rather, a daily journal is kept by paid helpers, and we evaluate success largely on the basis of Quality-of-Life Mapping. This technique asks the person being supported, family and friends to delineate 'success indicators,' and to periodically review how well the person is doing in relation to each, suggesting strategies to bring reality into closer agreement with 'what's possible.' We proposed use of this technique after James' mother observed that, if James were to be the employer, it wouldn't make much sense for him to hire someone to "keep data" about his behavior. We all noted the incongruity.


What accounts for the success of your venture? -- This is a hard question to answer. It seems to us that several factors have been important:


What will the Manual contain? -- Besides elaboration on topics included in this overview, we intend to provide (1) exercises (e.g., to clarify values; to help decide on the organizational form -- proprietorship, partnership, corporation -- for managing support services); (2) checklists (e.g., achieving tax exempt status, if this is the direction taken); and (3) samples of various tools (e.g., The Willis Drive Partnership Agreement; personnel policies; job descriptions; recruitment ads and flyers; program (or service) design for vendorization; Quality of Life Mapping; etc.).

 

For additional information, who can I contact? -- You may contact me as follows:

John Shea

Allen, Shea & Associates

1780 Third Street

Napa, CA 94559

Phone: (707) 258-1326

Fax: (707) 258-8354

email: asa@napanet.net

 

 

 



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