Person-Centered Planning, Guardianship, and Supported Decision-Making

Spring in Charlevoix, MI

In March 2017, the Administration on Community Living sent out a request for comments on “Draft Principles for a Person-Centered Approach to Serious or Advanced Illness”. The announcement said:

“At ACL, we believe that every person should be able to make choices and to control their own decisions, regardless of their age, disability, or illness. [emphasis added] ACL, in consultation with stakeholders from the aging and disability communities, has drafted a set of principles to guide our work in this area, and to enhance existing programs and services related to serious or advanced illness for older adults and people with disabilities.”

What’s wrong with this picture? When you read that first sentence do you hear fingernails scraping on the blackboard or is it just me? Why is the ACL conditioning their request for public comments on the agency’s belief that age, disability, or illness do not impair anyone’s ability to make and control decisions? If you read further in the Draft Principles, you will find that this belief is reinforced and is the basis for proposed policy promulgated by the federal government.

If you live in the reality-based world of families of people with severe and profound physical, cognitive, or behavioral disabilities, you know that “belief” does not cause our loved-ones to have abilities they, in fact, do not have, any more than pixie dust allows them to fly. People with disabilities who are able to make and control decisions for themselves, with or without support from others, should be protected and encouraged in their right to do so. But acknowledging that some people do not have this ability, is the first step in protecting them from neglect, abuse, and exploitation.

Below are comments from VOR, a national organization that “advocates for a full continuum of high quality care and human rights for all people with intellectual and developmental disabilities (I/DD)”. As a member of the committee that wrote these comments for VOR, they are also my personal views.

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VOR Comments on “Draft Principles for a Person-Centered Approach 
to Serious or Advanced Illness” proposed by the 
federal Administration on Community Living

May 12, 2017

VOR is a national nonprofit organization that advocates for a full continuum of high quality care and human rights for all people with intellectual and developmental disabilities (I/DD).

VOR members include families of people with severe and profound life-long disabilities. Many of our family members with I/DD live in Intermediate Care Facilities (ICFs/IID) and other congregate settings such as skilled nursing facilities and smaller community group homes, while others live at home with their families or in supported living situations. Many function at the level of infants or toddlers or have complex behavioral problems that may endanger themselves or others. Some face serious and advanced illnesses similar to those of the aging population. As the lifetime survival of people with these severe disabilities is extended through improved medical care and other services, more and more people with severe to profound I/DD will face these challenges.

Our disabled family members are a small minority of those served in Medicaid-funded programs but their needs are great. For them to survive unharmed requires comprehensive care and understanding of their intensive needs. Most are unable to make decisions for themselves in some or all aspects of their lives. Many have legal guardians appointed by state courts. Most of the guardians are also family members or friends who know the individuals well and are committed to protecting their interests.

VOR supports the availability of a full spectrum of services and residential options appropriate to the needs of the individual including larger congregate settings as a necessary component of the long-term services and supports (LTSS) system, along with Home and Community Based services that support people in a variety of living arrangements.

Principles related to planning and decision-making:

Comment #1: “Supported decision-making principles and practices should guide those who are helping individuals who need assistance with planning and decision-making. Individual goals, decisions, and known views should take priority. “

Supported Decision-Making is a movement based on a controversial ideology that promotes the idea, that with almost no exceptions, all people with I/DD can make their own decisions with support from an informal network of advisors. With SDM, the advisors are not court-appointed nor do they bear any responsibility for ensuring the success of outcomes. SDM proponents view the “Right to Fail” as an important freedom, regardless of the individual’s ability or vulnerability.

The primary goal of SDM is to move away from “substituted decision-making”, where the guardian makes decisions for the incapacitated ward. This approach would then, in fact, be doing what SDM proponents criticize: substituting the judgment of the incapacitated ward with the judgment of a “support team”. SDM is not, however, a suitable replacement for court-ordered and monitored guardianship for those unable to make or communicate decisions for themselves.

VOR does not oppose the use of Supported Decision-Making for all who voluntarily wish to use methods promoted by SDM advocates. All decisions must rest with the individual or the legal guardian as authorized by a state court and it must be understood that guardianship procedures are available to those who need them, regardless of their participation in SDM activities. As such, there is no reason to give up guardianship in order to use Supported Decision-Making.

For people who have appointed health care advocates or have made other arrangements for others to represent them if they become too ill or too disabled to make their own decisions, advance directives should be honored in the person-centered planning process. The appointed representatives should be allowed to make the decisions that the individual has asked them to make.

Comment #2: “All parties should presume that people with real or perceived cognitive, communication, or intellectual disabilities are able to make decisions.”

The presumption, that all people with cognitive, communication, or intellectual disabilities are able to make decisions, is simply false. The underlying causes of these conditions often result in a person being unable to make or communicate decisions in all or some aspects of their lives. In many instances complex decision-making that takes into account possible harmful consequences is impaired. There must be assurances that the individual’s interests are protected and that they are not subjected to abuse, neglect, or exploitation because of their disabilities.

An analysis of the Americans with Disabilities Act regulations by the U.S. Department of Justice concludes that, “…public entities are required to ensure that their actions are based on facts applicable to individuals and not on presumptions as to what a class of individuals with disabilities can or cannot do.” [This is found on Page 193 of Appendix B, a section-by-section analysis Title II of the ADA regulations ; see also The DD News Blog,"What does the ADA 'Integration Mandate' Really Mean?"]

Presumptions that people can make decisions when there is clear evidence that they cannot is a disservice to vulnerable individuals that exposes them to unacceptable risks.

Comment on Principle #4: “Individuals need access to services that enable them to manage their conditions and symptoms, live in the setting of their choice, and be integrated into the community….”

Facilities that provide a higher level of care for people with severe and profound I/DD such as ICFs/IDD and skilled nursing facilities are part of the system of Long Term Services and Supports and should be included in this statement.

These are technically considered institutional placements, but in a 2015 Survey “Giving Voice to Families and Guardians”, VOR found that people living in these facilities and smaller community homes were about equal in the degree of engagement with their communities. Respondents reported that their family members enjoyed an average to high degree of interaction with the broader community away from their ICF and Non-ICF homes (“integration”). [Page 11]

VOR supports person-centered planning principles that acknowledge the full range of needs and abilities for people with I/DD. We support family decision-making consistent with The Developmental Disabilities Assistance and Bill of Rights Act:

“Individuals with developmental disabilities and their families are the primary decisionmakers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options, and play decisionmaking roles in policies and programs that affect the lives of such individuals and their families.”

- The Developmental Disabilities Assistance and Bill of Rights Act of 2000, 42 USC 15001(c)(3)(2000)

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See also, "Issues to Consider Regarding Guardianship and Supported Decision-Making" from VOR and "Understanding Guardianship and SDM" from The DD News Blog