Helping to create a safe, healthy, and comfortable home takes time.

The more effort invested in planning and due diligence the more sustainable and fulfilling the eventual outcome will be. We are not looking to “place” people, or to put them into a box that will look safe but within which they will be unable to grow and enjoy their life. This section discusses Person-Centered thinking and ways to go about planning for successful outcomes.

This section was created in partnership with Christopher Liuzzo.

 

Module 1. Person-Centered Thinking

Everything begins with the person who is seeking housing. People with I/DD and their advocates have been stressing the need for genuine person-centered thinking for many years. Too often a “personalized” program or plan pays lip-service to person-centeredness while blithely setting a series of meaningless pro forma goals and “hopes and dreams”. While we still have a long way to go, we have seen improvement in recent years in New York. The federal Health and Human Services “Standards for Person-Centered Planning and Self-Direction in Home and Community Based Services (HCBS) programs” (per the Affordable Care Act) sets out clear and demanding requirements for States to follow.  Training programs for support personnel provided by resources such as The Council on Quality and Leadership (CQL) and most importantly decades of Self Advocacy have moved the focus more towards the person at the center of any plan.

 In its Waiver creation guidance to states, The Centers for Medicare and Medicaid Services, (CMS) which has federal oversight of all Medicaid programs, says the following; “CMS encourages and supports the use of person/family-centered planning methods in service plan development. Such methods actively engage and empower the participant and person selected by the participant in leading and directing the design of the service plan and, thereby, ensure that the plan reflects the needs and preferences of the participant (and/or family, if applicable). Person/family-centered planning is an integral element of participant direction of Services.[1]

Per the federal Health and Human Services Administration Person-centered Planning (PCP) assists the person to construct and articulate a vision for the future, consider various paths, engage in decision-making and problem solving, monitor progress, and make needed adjustments to goals and (Home and Community Based Services) HCBS in a timely manner. It highlights personal responsibility including taking appropriate risks (e.g., back-up staff, emergency planning). It also helps the team working with the individual to know the individual better.”

Before any work on housing begins, a deep understanding of the person’s wishes, desires, needs and resources need to be undertaken. For people who have difficulty communicating, this process may take many hours, but without a sound beginning no housing plan will be sustainable.

Beginning

Any good housing plan begins with the person seeking housing. Not with the building, the house, the apartment or the condo. The late Hank Bersani[2] often reminded planners not to “draw the bull’s eye” before they had engaged in a quality person-centered planning process. Deciding where and with whom a person may live before doing this puts the cart before the horse.

The range of tools and definitions surrounding person-centered planning can be confusing, [3]they include MAPS, Paths, Essential Lifestyles Planning, Personal Futures Planning, Liberty Plans and more. Of all these tools and definitions, perhaps one of the most cogent, concise and meaningful comes from John O’Brien and Beth Mount:[4]

“Person-centered planning facilitates a person and their allies’ discernment of the person’s purposes, gifts and capacities”, so as to support the person to “show up in community life as a valued friend and a contributing citizen.”  Note the key words present: discernment, purposes, gifts, capacities, friend and citizen. Note the key words absent: client, interdisciplinary, skill development, ADL’s, behaviors.

In the end, quality person-centered planning is really rather straightforward. All the tools and processes are secondary to these simple to understand but difficult to enact markers:

  • Conversation grounded in deep listening. Excellent person-centered planners are deep listeners. They come to the conversation with no preconceived notions. They are deeply curious about the persons with whom they are planning. They want to listen and support the discernment of people’s purposes, gifts and capacities. They love to be surprised by what is revealed during the conversation.
  • Planning requires a profound respect for people and their life experiences, regardless of the complexity of impairments. Great person-centered planners do not consider planning as something done “to” or “at” people. They consider themselves to be co-creators acting with They have a minimal sense of their own importance and downplay hierarchy. Regardless of the credentials they may (or may not) hold, they see themselves as co-equals with the people they support.
  • A lens which puts people’s life experiences into context. Many people with I/DD have a history of isolation, marginalization and devaluation. They have been subjected to low expectations and years, if not decades, of “programs” of meaningless activities. Quality person-centered planning surfaces these experiences, supports others to understand them and addresses them in a healing fashion as part of the plan.
  • Hearts are opened. When highest purposes, gifts and capacities are discerned and life experiences are exposed, compassion is aroused. If there are both belly laughter and tears during the planning process, that is a sign that good things are happening. Good person-centered planning is neither sterile nor clinical.
  • People are inspired to “Imagine Better.”[5] They are opened to possibilities not before seen or imagined. “Premature realism” is put aside. (premature realism is marked by expressions like “that will never work”, “we tried that before”, “that is not realistic”).
  • Finally, quality person-centered planning is disruptive. Supporting people to move toward their highest purposes will call on others to behave differently. This especially applies to provider organizations, which may be called upon to try new models, utilize resources in untried ways, and change or even give up existing rules and structures. This may be the most meaningful result of effective person-centered planning.

 

So, Watch Out for Distractions

If person-centered planning really is about simple ideas such as listening, respect, curiosity and compassion, why do so few people have genuine and authentic experiences? Why are so many steered to existing “slots” in day programs and “beds” in group homes?   Doesn’t it make sense that slots or beds could not have been developed with a specific person in mind and must be bullseyes drawn before any planning was done?

Here are some distractions many people experience which are labeled “person-centered”, it is good to be aware of them. When people are aware of these distractions, they can call planners to account and guide them back to authentic planning.

  • Seemingly endless assessments, with literally hundreds, if not thousands, of data points are distractions. In New York, there are the Coordinated Assessment System (CAS), the I AM assessment, the Developmental Disabilities Profile (DDP), as well as other assessments such as the Council on Quality Leadership’s extensive interview suite and the Adaptive Behavior Assessment System (ABAS). While these may yield some useful data, they are not a substitute for deep listening. They can often be completed, at least in part, by someone barely familiar with the focus person. They are frequently mechanistic, and algorithm driven, producing pre-determined drop-down service menus. A plan that comes out of a computer is likely not very person-centered, and may in fact be designed to facilitate billing rather than provide genuine support.
  • When people are told they are “not ready” for their desired life, that is a distraction. Most genuine plans reveal people’s desire for what has been called, the Good Life: “I would like my own place; I’d like to marry my girlfriend; I want a job; I would like to have a dog; I’d like to go on vacation.” All too often, so-called person-centered plans turn the onus back on the people who express these modest desires. They are told they have to earn the Good Life by developing new skills, like cooking and money management, learning to get along better with their “peers”, showing they can manage to make their beds and clean their bathrooms. These are not-so- subtle expressions of authority and power over people, not respect and being “with” people.
  • When people are told they aren’t ready for their expressed Good Life, they may well be steered into services and especially settings, then told that even once they spend an indefinite amount of time in these services and settings, that it is a “we’ll see” about moving toward the Good Life. This process may well-and often does-result in years spent in services and settings that look very little like the Good Life. The delivery of services becomes an end in itself rather than achieving the Good Life. This is a distraction.

 

How Will I Know It When I See It?

Authentic person-centered planning is generative: it creates outcomes. Experience of these outcomes is a good sign that authentic person-centered planning has occurred.

Authentic person-centered planning contributes to the experience of what Otto Scharmer calls “generative listening.”[6] When this happens, Scharmer says, “you realize that you are no longer the same person you were when you started the conversation. You have gone through a subtle but profound change.” People may well say things like “this was amazing” or “this was life changing” or “I can’t believe what happened today.” Authentic person-centered planning generates collective will; a commitment to move toward the person’s Good Life is palpable across participants.

The Good Life is marked by what John O’Brien and Beth Mount, in their book Pathfinders, [7]call the Five Valued Experiences. Authentic person-centered planning results in intentional movement toward these experiences:

Belonging in a diverse network of relationships and networks.

Being Respected, especially by engagement in playing valued social roles.

Sharing Ordinary Spaces, with typical citizens.

Contributing to pursuits that make a positive difference to others.

Choosing in ways that reflect a person’s highest purposes.

This intentional movement is evidenced by concrete measures that may include:

  • Identification of resources that will be applied toward the five experiences
  • Individualization of these resources (i.e. not shared with other persons)
  • People and their allies experience increased control of resources
  • Roles are redefined so that key actors’ activities are dedicated to achieving the five experiences
  • Person in leadership roles and with administrative authority pledge commitment to support people’s plans

 

The Person’s Story

All the assessment and planning instruments in the world will never be as effective as knowing a person’s story. Services that are funded with public funds are compelled to report on outputs and outcomes. Taxpayers require it and our culture is imbued with the belief that public support should always be minimally and grudgingly disbursed. Over the decades since deinstitutionalization we have accumulated layer upon layer of regulation, compliance and reporting requirements. We have tried, with limited success, to quantify quality and to create person-centered services. We convene Interdisciplinary Team meetings that draw upon multiple professions, but which can obscure the person beneath the paperwork. We have unconsciously absorbed the fallacy that if we can measure it, we have achieved the goal; that being able to tick the box means that we have accomplished something. As a person goes through the process of understanding housing they will go through a series of assessments, eligibility screens, planning instruments and programs, but be mindful that all of these instruments are tied to the funding, not necessarily about the person.

Law, regulation and bureaucracy require planning and compliance formats and we have to adhere to them in order to continue to be funded. However, the real planning is done with the person themselves, and works best if it can be done one-on-one or with their closest advocate and is based on their story. It takes a long time to really understand someone’s housing goal.

  • Do they want to live with other people?
    • will they have to?
  • Do they want what their parents want, or do they want something more independent?
  • Have they had time to learn how to make decisions, and are the people in their Circle ready to take some risk and to learn from mistakes?

 

In the Planning Instrument that is used by Housing Navigators there is a strong emphasis on narrative and story. There are many tools that can provide checklists and things to do or not do, but fundamental to this housing planning process is the necessity to include the person at all stages and to have the patience to invest the time. Time invested in planning directly correlates to the sustainability of the outcome. 

Creating a Circle of Support

One of the questions that every parent asks is “what will happen when I am unable to support my son or daughter?” In a traditional group home, the person’s welfare is the responsibility of the agency and the person’s guardian if the family is unable to provide support. There is an assumption of limited self-advocacy. Families take comfort in the permanency that an agency might provide, and they believe that they can rest easy now that their loved one is provided for. This is an understandable emotion, and rings especially true for the generation that saw how terribly neglected some of the patients discharged from institutions were in the 1970s and 80s. They live with fear as to what might happen when-+54 they are no longer alive to advocate for their son or daughter. However, experience shows that while some agencies do this work very well, there are risks. Agencies change, merge with others, leadership changes, founders retire, funding changes, standards shift. Given the Institutional Bias embedded in New York’s residential system, an agency has little incentive to foster independence or self-advocacy. A person becomes more institutionalized if they lack contact with the outside world, and this institutionalization compromises both their quality of life and their lifespan. Whether or not they live in a certified or in a more independent setting, it is paramount that they and their family and advocates create a Circle of Support which can look out for their interests and advocate for them as their parents become less able to do so. This is especially important for people living in non-certified or non-agency-based settings.

The starting point for service planning should be the Circle, whether a person is receiving services through the Office for People With Developmental Disabilities (OPWDD) or from elsewhere. The Circle, in partnership with the person, addresses the person’s needs, their health and safety, risks, goals and desires. The OPWDD system is primarily funded through Medicaid, and even with the flexibility of the Waiver the plan follows the prescriptive path of a medical model. People living in the traditional congregate care system will tend to have highly prescriptive plans, partly in order to meet compliance requirements. People living outside the congregate care system have more flexibility but need to be mindful that Medicaid funding will always be contingent upon a prescribed plan of services. 

A Circle of Support brings together family, friends and professional supporters who are focused on the needs and aspirations of the person with I/DD.  The focus is not on “programs” or creating checklists and pre-formatted compliance plans, but on the long-term goals and interests of the person. A typical Circle will have an inner core of close family, with a series of concentric Circles to include extended family, professionals who work with the person on a regular basis and professionals who work with the person on an intermittent basis (for example their attorney or physician). Meetings do not have to be large gatherings; the use of social media today can bring in participants from anywhere in the world, and at different times. The more robust the Circle of Support, the more achievable and sustainable the person’s goals are likely to be. Tools are available to help with creating Circles of Support[8] and to bring together resources for people who may at first seem to have little connection to family or other support[9].   

OPWDD’s Self-Directed Services regulations require a Circle but the creation of a Circle should not be driven solely by compliance, and the principles apply to providing for any one with significant support needs, regardless of ability or age. A well-constructed and sustained Circle is a powerful way to ensure that the focus remains on the person.[10]

OPWDD stresses the role of the volunteer in the Circle, but to be comprehensive and sustainable the Circle should also include professionals involved in the person’s life. Yes, they bring their knowledge and experience, but by being included they also gain a more intimate perspective on the person and are less inclined to see them as a “case”. They get a chance to learn about the person’s family life, their childhood, their progress and the things that matter most to them. Current literature refers to Paid and “Natural“ (i.e., unpaid) supports. The reality is that many Paid support people perform their work with great love and kindness and are very close to the people they support. Be wary of too much distinction between “Paid” and “Natural” – find the right people with the right commitment and above all include them in the person’s life.

Non-professional Circle members are not paid for their time and currently there is no provision for payment for the professionals in the Circle, other than the Care Manager and the Self-Direction broker. [11] Meetings tend therefore to be called during the working day when the professionals can be paid. However, the context and setting for planning meetings matter, so, as much as possible, meetings should be in the person’s home, at a time convenient to them and to the other non- professional members of the Circle.

Partnerships with Provider Agencies

The noted philosopher Sy Syms maintained that “an educated consumer is my best customer” – how can a person get educated about the provider agencies that they will need to help to support them? There are some six hundred provider agencies in New York. The majority of them are small not-for-profits, with all of the vulnerability that being a small business entails.[12] Over time and with the advent of Managed Care many of these agencies may go out of business. Agencies have failed in the past for various reasons, but OPWDD has been able to prevent any harm befalling the people who were in the agency’s care, transferring their services to other agencies.  Consolidation of provider agencies will reduce choice, but is likely (at least in the near term) to make the system more financially sound. In the longer term it seems likely that non-profit providers will have to compete with for-profit businesses in some of the fields in which they operate and they may be compelled to rethink their priorities and business models. The partnership between a provider agency, the person seeking support and their family is a critical element in sustainability, and is likely to last for many years. Identifying an agency that aligns with best practices and principles, through the lens of how well they are positioned for and committed to providing genuinely person-centered support for independent housing is vital, too often choices are made under pressure and based on near-term availability or convenience. Before deciding to obtain all or some of their services from a particular agency the person or their advocates should perform their own due diligence. [13]

  • Review the agency’s IRS 990 report. The 990 details the funding sources for the agency. It will show whether they are dependent on one particular funding stream or have a diverse source of income. It will show what they pay their senior management, who the members of the board are and whether there are related businesses. It will also show their contribution history.[14]
  • Find out what kinds of training the agency provides to its staff and its volunteers, including its board. The most well-known course is provided by the Council on Quality Leadership (CQL) which teaches a fundamental rethinking of relationships and ways to understand people’s interests, wishes and hopes. It is an excellent program, but not the only kind of training available and a vibrant agency will encourage professional training at all levels of the organization.
  • Join a local social media group of people who have I/DD and their families and find out what kinds of experience people have had with different agencies.
  • Who are the volunteers? Is the board mostly comprised of parents of people in the agency’s programs? For such boards the good news is that the board will likely have a substantial long-term commitment; the downside is often a resistance to change.
  • Meet with the management and staff, and if things don’t feel right, express your concerns. For too long families have been in a role that is not in partnership with an agency, even with “progressive” agencies – It’s time for a change.
  • The Covid-19 pandemic showed us that even large nonprofits operate on very thin margins, and smaller entities may be driven out of business in a crisis. What plans does the agency have if they are faced with a significant revenue shortfall?
  • Lastly – does the agency provide any services that are not funded through OPWDD? If its only business is to follow OPWDD mandates and compliance is it sufficiently diversified?

 

Guardianship
In any discussion or planning for Long Term Supports and Services for a person with a disability, the person themselves is always the primary focus and the one who has to make and live with the major decisions. When current guardianship law was created in 1969 in the early days of deinstitutionalization it was assumed that a person with I/DD “had no realistic likelihood of change or improvement over time”. Contrast this with the Olmstead language thirty years later; “institutional placement of [people] who can handle and benefit from community settings perpetuates unwarranted assumptions that [people] so isolated are incapable or unworthy of participating in community life”. People with significant levels of disability are capable of choice and decision making, and as guardianship laws face reform new ways to support those decisions are coming into practice.


When a person turns 18 years of age they are considered to be fully emancipated and responsible for their own decisions. If the person’s decision-making ability is compromised by a cognitive disability, they may have difficulty in safeguarding their interests, making informed decisions about their health, or managing their finances. Historically people in such a situation have been subject to guardianship. In New York State Guardianship takes two forms, Article 81 of the Mental Hygiene Law “authorizes a court to appoint a guardian to manage the personal and financial affairs of a person who cannot manage for himself or herself because of incapacity”[15].

In 1969 The Surrogate’s Court Procedure Act (SCPA) was amended to include article 17-A providing for the appointment of guardians for people with I/DD.  The underlying assumption at the time was that I/DD was a permanent condition and the person had no hope for improvement or autonomy. This results in “an immense loss of person liberty” and does not allow for partial decision-making authority for the person[16]. Unfortunately, 17-A has little room for nuance, if a person is subject to guardianship, they have no rights, but in many situations if the parent wants to help their adult son or daughter who has severely compromised decision-making capacity, they have to nonetheless obtain guardianship. There are resources to assist with the process provided by the Surrogate’s court and also available through OPWDD Family Support Services for Guardianship guidance offered by provider agencies and Care Coordination organizations.

HealthCare Proxy

We all should have a Health Care proxy, someone chosen to make healthcare decisions “when your doctor has determined that you are not able to make healthcare decisions for yourself”. [17] For people with I/DD which is associated with a higher risk for many chronic conditions a health care proxy is essential, and simple to execute.

Increasingly Surrogate Courts are concerned about the absolute binary nature of 17-A and the statute is being reconsidered. In other types of guardianship and in other states courts have leant to granting more control to the person for whom guardianship is sought and limiting the power and control of the guardian.

Supported Decision-Making

Supported decision-making is a process by which a person with an intellectual or developmental disability can be supported in making his or her own decisions. Supported decision-making draws on common experience of consulting or seeking assistance from others when making decisions or choices in our own lives.

People with I/DD have a right to make their own choices and decisions, but may need more or different kinds of support to do so. Supports may include helping a person access information that is useful or necessary for a decision, helping her or him weigh the pros and cons, assisting in communicating the decision to third parties, and/or in carrying it out. But the decision is always the person’s (the "decision-maker") and not the supporter’s.

One common form of supported decision-making involves the decision-maker identifying and choosing a person or persons whom she or he wishes to support them in various areas. For example, they might wish one person to support them with regard to finances, another with health care, and a third with intimate relationships. There is no limit to the number of supporters a decision-maker may choose, but usually it is between one and ten. Supporters are frequently family members, and might also include friends, peers, neighbors, or service providers, but the relationship must always be one based on trust.

People with I/DD may want to record the arrangement they have made with their chosen supporter in writing in what is called a “Supported Decision-Making Agreement”. The Supported Decision-Making Agreement spells out the rights and obligations of the parties, including an understanding by supporters that they are to assist the decision-maker, but never to substitute their own decision in lieu of theirs. Although not as yet legally binding on third parties (like banks or healthcare providers) in New York, supported decision-making agreements, and the relationships that underlie them may be used as an alternative to guardianship.[18]

To learn more about the Person-Centered Approach visit the NYHRC website to view “Person-Centered Thinking and Planning Introduction” by Kirsten Sanchirico, Certified Person-Centered Thinking Trainer and Planner with the NY Alliance. This presentation was originally aired during the “2019 Statewide Learning Institute” https://youtu.be/xIYsy1Vxapw


[1] Application for a §1915(c) Home and Community-Based Waiver [Version 3.5]
[2] Among many other things, Hank was the president of the AAIDD, 2006-2007.
[3] An excellent resource is Inclusion Press: https://inclusion.com/path-maps-and-person-centered-planning/ retrieved June 20200
[4] John O’Brien and Beth Mount, Pathfinders: People with Developmental Disabilities and Their Allies Building Communities That Work For Everyone, Inclusion Press, Toronto, 2015.
[5] An expression attributable to Michael Kendrick: https://www.kendrickconsulting.org/
[6] Otto Scharmer, Theory U, Leading from the Future as it Emerges. Society for Organizational Learning, Cambridge, MA. 2007.
[7] PATHFINDERS People with Developmental Disabilities and Their Allies Building Communities That Work Better for Everybody. Pp 95-96 Inclusion Press 2015
[8] Amado, A. McBride, M. Increasing Person-Centered Thinking etc. https://rtc.umn.edu/docs/pcpmanual1.pdf retrieved June 2020
[9] Family Finding connects people who may seem to have little family resources. http://www.familyfinding.org/  retrieved June 2020
[10] Amado, A. N. and Mc Bride, M. (2001), Increasing Person-Centered Thinking: Improving the Quality of Person-Centered Planning: A Manual for Person-Centered Planning Facilitators. Minneapolis, Minnesota: University of Minnesota, Institute on Community Integration. Includes helpful material on creating a circle of support and a listing of relevant publications
[11] Wittingly or unwittingly our systems seem unable to shake off Institutional bias, both in soft forms such as this instance and in more identifiable regulations.
[12] Kendrick, M. Thinking about what keeps people safe. Belonging Matters Inc. Issue 34 March 2018
[13] It must be said that there are parts of the State where there may be little choice of provider, and there is no easy solution when having to deal with such thin resources.
[14] How to Read the IRS form 990  https://roadmapconsulting.org/wp-content/uploads/2016/03/how_to_read_form_990.pdf  Nonprofit Coordinating Committee of New York. Retrieved June 2020
[15] Guardianship for incapacitated people in New York under Article 61. Senior Law.com http://www.seniorlaw.com/guardianship-for-incapacitated-people-in-new-york-under-article-81/ retrieved June 2020
[16] I am indebted to Farrel & Fritz website “Surrogate’s Court Procedure Act Article 17-A and its Ever Changing Landscape http://www.farrellfritz.com/surrogates-court-procedure-act-article-17-ever-changing-landscape/ retrieved June 2020
[17] Health Care Proxy guide. NY State DOH https://www.health.ny.gov/publications/1430.pdf retrieved June 2020
[18] I am indebted to Desiree Loucks Baer from NADSP for her discussion of Supported Decision Making.