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Services Issues

Position Statement 36: Self-Determination Initiatives

Contents

1.     SUMMARY.. 2

2.     POLICY.. 3

2.1.    Self-Directed Care (SDC) 3

2.2.    Shared Decision-Making (SDM) 4

2.3.    Presumption of Competency. 6

2.4.    Supported Decision-Making. 6

2.5.    Advance Directives. 7

3.     Background. 8

3.1.    Institutional Support. 8

3.1.1.    New Freedom Commission (2003) 8

3.1.2.    The Department of Health and Human Services (HHS) (2007, 2013) 9

3.1.3.    The American Bar Association (ABA) Supports SDM as an Alternative to Guardianship  10

3.1.4.    State Legislation and Regulation in Support of SDM... 10

3.1.5.    Veterans Administration (VA) 11

3.1.6.    The UK and Australia. 11

3.2.    Evidence in Support of SDC and SDM... 11

3.2.1.    Human Services Research Institute (HSRI) (Florida, Utah) 12

3.2.2.    Texas Studies. 12

3.2.3.    Florida Studies. 14

4.     Call to Action. 15

5.     Effective Period. 18

Position Statement 36: Self-Determination Initiatives

 

  1. SUMMARY

This position statement advocates for expansion of self-determination in every aspect of decision-making concerning treatment of people with mental health and substance use conditions. This is consistent with Mental Health America’s long-standing advocacy of respect for the insights and choices of people with lived experience of mental illness and addiction.

Self-determination is best understood as a gradient, beginning with people with full capacity for managing decisions and proceeding along a continuum of shared decision-making providing greater and greater support as needed by people with more limited capacity. MHA advocates that people in treatment be treated as generally retaining substantial capacity and that their autonomy be respected by engaging them in a respectful dialogue. More supported decision-making is appropriate only when shared decision-making is not sufficient to come to agreement.

In other words, MHA advocates that individual autonomy be fully respected by starting with the presumption of full capacity. If for some reason, such as a psychotic break or severe intoxication, the treatment dialogue begins at a lower level, the goal should always be to move to a higher level as soon as possible, in the interest of furthering the person in recovery’s own journey. The authority and evidence to support this position is discussed in the background section of this position statement.

This position statement specifically assesses and advocates for expansion of self-directed care (SDC) and shared decision-making (SDM) as self-determination initiatives to increase the autonomy of people with mental health and substance use conditions.

Self-directed care (SDC) is an innovative practice that is now being tested in programs for people with mental health and substance use conditions, premised on the proposition that increased autonomy will produce greater satisfaction and better results. SDC proposes that people in recovery have the right and ability to assess their own needs, determine how and by whom those needs are best met, and evaluate the quality of the services they receive. SDC is gaining greater importance in the medical field as a whole and is proving very successful in the mental health arena. Substance use conditions are just beginning to be addressed.

Developed as an innovative program model for persons with chronic disabilities, SDC participants control an individual budget and are empowered to customize their own service plans in accordance with their preferences. Mental health SDC is a model process that grants participants access to a flexible fund from which traditional and non-traditional services and supports can be purchased. Typically, mental health SDC initiatives give participants agency even in cases of imperfect competency by 1) establishing a recovery plan with participant-defined goals, 2) giving participants the power to control their own monthly budget and choose services and tools to reach their goals, and 3) providing participants access to decision-making support to ensure that the participant’s decisions follow the established plan and budget and are reasonably related to the person’s recovery process. By providing decision-making support rather than making decisions, staff’s discretion is eased but not precluded, assuring accountability for the use of public funds.

MHA supports SDC for three reasons:

  • It furthers participants’ rights to autonomy, agency, and choice.
  • It has been shown to be an effective model to promote recovery and assure quality of health care.
  • It shifts incentives toward a system of learning, self-monitoring, and accountability.

Shared decision-making (SDM) is a key component of patient-centered health care. It is a process in which clinicians and people in treatment work together to make decisions and select tests, treatments and care plans based on clinical evidence that balances risks and expected outcomes with people’s preferences and values. MHA’s commitment to self-determination of people in recovery leads logically to advocacy of SDM in all treatment decisions. MHA supports SDM processes that maximize the autonomy of people in recovery, are culturally and linguistically competent, and are driven by the concerns of people in treatment and their families. Proper implementation of SDM is key for the successful functioning of any SDC plan, and it is important to recognize that potential SDC participants, like anyone else, have the right to a careful deliberative process in consenting to or refusing treatment, with the provider functioning as an honest broker.

Guardianships and other forms of supported decision-making should not be confused with SDM and, when needed, should be applied in the least restrictive manner and with the narrowest scope by maximizing the respect granted to the person in recovery. Availability and use of advance directives should be expanded to maximize the autonomy, agency and choice of people who may lack current capacity to participate in SDM and those who are participating in SDM, but may have an emergency or other circumstance where an Advanced Directive would be helpful.

MHA opposes initiatives aimed at reducing government resources or accountability for providing quality care, and will contest any effort to market such a proposal as a self- determination initiative. It is important that the budgets provided for self-determination initiatives are adequate to support recovery.

  1. POLICY

Mental Health America (MHA) envisions a just, humane and healthy society in which all people are accorded respect, dignity, and the opportunity to achieve their full potential free from stigma, discrimination, prejudice, and marginalization. MHA advocates wellness and recovery as the guiding principles for a mentally healthy society and for treatment of mental illness and addiction.[1]  Consistent with this philosophy, MHA promotes individualized planning and self-determination initiatives for individuals with mental health and substance use[2] conditions as important tools in the development of recovery-oriented systems of care.

This position statement advocates for expansion of self-determination in every aspect of decision making concerning treatment of people with mental health and substance use conditions. This is consistent with Mental Health America’s long-standing advocacy of respect for the insights and choices of people with lived experience of mental illness and addiction.

Self-determination is best understood as a hierarchy, beginning with people with full capacity for managing decisions and proceeding along a continuum of shared decision-making with greater and greater support as needed by people with more limited capacity. MHA advocates that people in treatment be treated as generally retaining substantial capacity and that their autonomy be respected by engaging them in a respectful dialogue. More supported decision-making is appropriate only when shared decision-making is not sufficient to come to agreement.

In other words, MHA advocates that individual autonomy be fully respected by starting with the presumption of full capacity. If for some reason, such as a psychotic break or severe intoxication, the treatment dialogue begins at a lower level, the goal should always be to move to a higher level as soon as possible, in the interest of furthering the person in recovery’s own journey. The authority and evidence to support this position is discussed in the background section of this position statement.

    1. Self-Directed Care (SDC)

Self-Directed Care has emerged as a promising practice to support recovery and well-being for persons with mental health conditions. SDC is a model for financing services and supports in which service users control a flexible budget which supports them in working toward recovery and wellness goals. SDC participants control public resources typically used to reimburse traditional providers; the resources are used to purchase a range of services and goods, including transportation, gym memberships, and employment-related goods and services, as well as traditional mental health services.

Typically, a specially trained support broker works with the self-directing person to identify hopes and dreams through a person-centered planning process, helps the person develop a budget based on his/her/their person-centered plan, and supports the person in developing the skills to manage the budget and make sound financial decisions. In mental health SDC, the support broker is often someone with lived experience in navigating the mental health system, a peer. A financial management service handles the tax and payment details, and administrators monitor expenditures and support brokerage activities to ensure accountability and quality.

Federally funded studies support the expansion of SDC. Demonstration projects in Texas, Florida, and five other states have shown that SDC is economically feasible, increases participant satisfaction, and improves participant outcomes, as detailed in the Background section of this position statement.

MHA supports SDC for three reasons:

  • It furthers important rights to autonomy, agency, and choice.
  • It has been shown to be an effective model to assure quality of health care and promote recovery.
  • It will shift incentives toward a system of learning, self-monitoring, and accountability. The overarching principles of SDC are:
    • Freedom to decide how a person wants to live his/her/their life.
    • Authority over a targeted amount of money.
    • Support to organize resources in ways that are life enhancing and meaningful to the individual.
    • Responsibility for the wise use of public dollars and recognition of the contribution that individuals with disabilities can make in their communities.
    • Confirmation of the important role that individuals with disabilities must play in a transformed system of care

The Center on Integrated Health Care & Self-Directed Recovery, led by Dr. Judith Cook, is an indispensable resource. The Center is located in the Department of Psychiatry of the University of Illinois at Chicago. The Center's research and evaluation address self-directed care, integrated health and mental health services, co-occurring disability and medical conditions, supported employment, and systems reform. The Center publishes a survey of completed SDC research[3] and a Self-Directed Care Implementation Manual, which offers a step-by-step guide to introducing self-directed care in local community settings.[4]

    1. Shared Decision-Making (SDM)

Shared Decision-Making refers to a set of skills and practices that clinicians can learn in order to engage in a collaborative decision-making process for healthcare decisions. Shared decision- making has been applied widely in many areas of health, including throughout the National Health Service System in the United Kingdom, and is referred to in the Patient Protection and Affordable Care Act (2010) in the United States. Although there is a focus on collaboration between clinician and the person in treatment, the question of who makes the actual decision comes to be seen as less important than the act of both parties engaging in the decision-making processes.[5] These processes include an initial discussion about the need for a decision and benefits of collaboration; discussion and iterative deliberation about the relevant options, including evidence for potential harms and benefits as well as personal preferences and values about these outcomes; and integration of this shared information into a decision or choice.

When carefully designed and strategically inserted into the everyday workflow, SDM holds the promise of helping put person-centered and recovery-based values into practice. The Dartmouth Hitchcock Hospital in Lebanon, New Hampshire is a good example. At the hospital, physicians refer patients to the Center for Shared Decision Making after diagnosis but before deciding on a treatment. These people are provided with decision aids -- carefully designed tools that support people who faced tough healthcare choices. These decision aids clearly describe specific medical conditions and relative efficacy of treatment options, as well as risks and possible side effects. For example, the decision to carefully monitor prostate cancer or to have prostate surgery, which could leave one impotent or incontinent. But, decision aids do more than present patients with risk-adjusted information.

SDM decision aids also include values clarification exercises through which people grapple with questions of how treatment might affect quality of life, e.g., is symptom relief worth sexual dysfunction or metabolic syndrome?[6] Family and friends are invited to use decision aids that can be brought home via a lending library or used via the Internet. The final task in a decision aid is to complete a decisional leaning scale. Here people indicate the status of their treatment preferences such as surgery, alternate treatment, watchful waiting or still undecided. This report is sent to physicians who review it with patients at the next appointment. Through discussion they arrive at an informed shared decision about next steps.[7]

In recent decades, mental health policies have given greater priority to the will and preferences of the people who use the services, including treatment decisions that involve assessment of risk by a person with somewhat impaired capacity. However, most mental health and other behavioral health services still generally rely on a medical model of care in which the healthcare professional is the dominant decision-maker. MHA is concerned that the autonomy of   people recovering from mental health and substance use conditions is compromised by this outdated decision-making process. Their recovery journey can be compromised and stress and trauma can be triggered by widespread neglect of or inattention to this decisional process. Accordingly, for people who retain some competency to make treatment decisions, a shared decision-making (SDM) process is more appropriate than the traditional authoritarian medical model.

    1. Presumption of Competency

SDM is a good alternative to a guardianship and often can avoid addressing the issue of competency altogether. It is important to note that even though some people in recovery are only partially competent to participate in shared decision-making, MHA is on record, in MHA Position Statement 22 on “Involuntary Treatment”[8] that:

  1. Presumption of Competency. It is a basic principle of American law that all adults are presumed to be "competent" - that is, they are presumed to be capable of making their own decisions about their own lives and their own medical care, including mental health treatment.
  2. Declaration of Incompetency. Every state has court procedures for determining when and if someone is incompetent. Only a tiny percentage of persons with mental health conditions have ever been declared incompetent under these procedures. This corresponds with the reality that almost all persons with even the most serious mental illnesses are competent most of the time - that is, they are capable of making their own decisions about whether to seek treatment and support and what treatment and support they should receive.
  3. Informed Consent. Informed consent is required for all medical care provided to persons who are competent. Unless and until a person has been declared to be incompetent, informed consent is required when mental health services are provided and SDM should be used.
    1. Supported Decision-Making

In contrast, supported decision making (sometimes erroneously referred to as SDM)[9] occurs when the person in treatment is not competent to make treatment decisions or has designated an attorney in fact or guardian as agent to act on his/her/their behalf. The agent then is required to determine the best course of action, balancing the person’s expressed desires with the agent’s perception of the person’s best interest (depending on state law).[10] Supported decision-making contemplates a structured process to inform the person of risks and benefits and solicit a candid response, often communicating through agent/advocates who may interpret the person’s will in interacting with providers. According to Simmons and Gooding (2017), “Supported decision- making is premised on the idea that no one is ‘purely’ autonomous – and that most, if not all, people are constantly making decisions with support from others. Supported decision-making brings this interdependence out into the open, and invites people to support but not take over the decisions of people in mental health crises or those with ongoing disabilities.”[11] Competency issues are only addressed if informal dialogue breaks down and legal issues arise, which may require a guardianship or a conservatorship or, if it comes to that, civil commitment. MHA urges supported decision-making even if the person in treatment does not have the final say under civil commitment, recognizing that in many cases (such as refusal of medication), a judge is generally required to make the final decision.

    1. Advance Directives

An advance directive or durable power of attorney with a trusted agent/advocate is by far the best way to enhance the decision-making process if competency may become an issue.

As stated in MHA Position Statement 22:[12]

Advance directives have proven to be useful instruments for maintaining and increasing the autonomy of persons with mental health conditions. MHA urges states to create and enforce laws which permit persons with mental illnesses to designate in writing, while competent, what treatment they should receive should their decisional capacity be impaired at a later date. Such laws should reflect the following principles:

  • There should be sufficient protections in place to ensure that such directives are created voluntarily and with informed consent.
  • In the absence of a judicial finding that, absent involuntary treatment, the person is dangerous to self or others, a directive refusing treatment must be honored.
  • As long as the advance directive does not conflict with accepted medical practice, the person's choice of treatment should be honored. 
  • If the person designates someone to make choices for him or her, that designee’s choice should be honored.
  • There should be clear mechanisms for creating, modifying and revoking an advance directive.[13]
  1. Background

Since the inception of the first asylums, mental health services have been viewed as a way to “control” or “manage” individuals with mental health and substance use conditions who are presumed not to have the competency and skills required to live “normal” lives. Self-determination, which began with systems serving people with developmental disabilities, assumes the opposite, that people with disabilities can responsibly manage their own care, and, in a recovery-oriented system, should be encouraged to do so. In the process, individual autonomy and satisfaction can be increased, and the need for public resources may be reduced.In the 1990s, the Robert Wood Johnson Foundation (RWJF) funded projects whose purpose was to give individuals with developmental disabilities the opportunity to control the money available for their own care. The first mental health SDC program (i.e., the first SDC program designed for persons with mental health conditions), Florida SDC, was started in 2002 in northeastern Florida. Mental health SDC programs for persons with SMI were later formed in at least seven other states: Iowa, Maryland, Michigan, New Hampshire, Oregon, Pennsylvania, and Texas. Although this initial phase of pilot and demonstration programs has yielded important information about behavioral health SDC, these programs were not designed for large-scale implementation within Medicaid. To make SDC a practical service model for the large numbers of Medicaid beneficiaries with mental health and substance use conditions, the mental health SDC program model will likely have to evolve and become more standardized, and new administrative infrastructure and training supports will be necessary.

  1. Institutional Support for SDC

Self-determination measures have become more and more accepted, and self-determination for people with impaired capacity has begun receiving institutional support. With the growing recognition that people who require support from the public mental health and substance abuse systems should have the freedom to define the life they seek to live and to direct the assistance they require15 comes the need to transfer power to people in treatment, with all of the inherent issues of capacity, control and accountability that are raised by that shift.

    1. President’s New Freedom Commission on Mental Health (2003)

The President’s New Freedom Commission on Mental Health described the need for a shift towards self-determinism in mental health care:

…[T]he culture of mental health care must shift to a culture that is based on self- determination, relationships, and full participation of mental health consumers in the work and community life of society.[14]

In partnership with their health care providers, consumers and families will play a larger role in managing the funding for their services, treatments, and supports. Placing financial support increasingly under the management of consumers and families will enhance their choices. By allowing funding to follow consumers, incentives will shift toward a system of learning, self-monitoring, and accountability. This program design will give people a vested economic interest in using resources wisely to obtain and sustain recovery.” (emphasis supplied)[15]

    1. Department of Health and Human Services (HHS) (2007, 2013)

Similarly, HHS, the Substance Abuse and Mental Health Services Admiration (SAMHSA), and the Center for Mental Health Services (CMHS) have supported the ideas behind SDC and SDM. HHS began tentative support of SDC initiatives 2007, when, after looking into six state Medicaid SDC demonstration programs, the HHS Office of Planning and Evaluation concluded that “initial findings are positive and indicate that self-direction could play an important part in creating a higher performing public mental health system that responds more effectively to consumer needs.”[16]

The HHS analysis went on to identify two aspects of successful SDC programs:

There are two aspects …that appear to be critical to its success. The first is that self- direction shifts control over the different dimensions of service delivery -- the who, where, when and what -- to service users. Much attention in health care focuses on being able to choose who provides a service but this has its limits. Experience of mental illness is highly individualized and recovery is a very personal issue. Self-direction gives individuals the opportunity to choose between different types of treatment and develop packages of care that respond to their specific needs. For many people, a personalized package of care involves addressing wider aspects of health such as wellbeing, self- esteem, employment and family life. The second critical feature of self-direction is that it provides consumers with support from the outset rather than leaving them to navigate the complex public system alone. In the rest of the health care system, individuals have to seek out their own sources of information and advice, whether that is their doctor, friends or family. (emphasis supplied)

In its 2013 analysis, HHS stated the argument succinctly:

A key argument in favor of the SDC approach is that it has potential to offset prevalent sources of consumer dissatisfaction with mental health care, including restrictions on choice of providers and services, fragmentation of services and providers, inconsistent involvement of consumers in shared clinical decision-making, and inconsistent adoption of recovery oriented services and practices. The greater control SDC offers in relation to planning one's own care may help align service plans with consumers' preferences and could encourage more programs and providers to adopt a recovery orientation. SDC also offers consumers greater flexibility to pay providers and purchase goods and services that usually could not be purchased in a traditional Medicaid plan or other health plan. This greater flexibility allows a re-allocation of some mental health spending from traditional to non-traditional mental health care goods, services, and providers. This re-allocation could encourage greater innovation in mental health service delivery, as innovative services and programs could obtain reimbursement directly from SDC participants. Innovative programs and services would consequently not be subject to the usual approval processes of insurers and managed care companies, processes which may impede innovation. (emphasis supplied)[17]

    1. The American Bar Association (ABA)

The ABA released guidance in 2019 advocating for the implementation of self-determination measures before seeking guardianship. However, the ABA stopped short of specifically advocating SDM, perhaps because it was focused on people with substantial incapacity to participate in treatment decisions. The ABA explicitly calls for a legislative requirement that “supported decision-making be identified and fully considered as a less restrictive alternative before guardianship is imposed” and urges courts to “consider supported decision-making as a less restrictive alternative to guardianship.”[18] However, as discussed above, supported decision-making is an inappropriate model for a person who is not (yet) under a guardianship or a durable power of attorney.[19]

The ABA released a PRACTICAL Guide in 2016 to urge attorneys to examine all available alternatives, including SDM, before seeking guardianship.[20] It is a joint product of four American Bar Association entities – the Commission on Law and AgingCommission on Disability RightsSection on Civil Rights and Social Justice, and Section on Real Property, Trust and Estate Law, with assistance from the National Resource Center for Supported Decision-Making (which may have injected some bias in the recommendations). It begins, as urged in this position statement, with the admonition to PRESUME (emphasis in original document) that guardianship is not needed and urges attorneys to “consider less restrictive options like a financial or health care power of attorney, advance directive, trust, or supported decision-making.” (emphasis supplied) And the Guide specifically endorses that attorneys work to “LIMIT any necessary guardianship petition and order.” Best practices “if a guardian is needed” include:

  • Limit guardianship to what is absolutely necessary, such as:
    • Only specific property/financial decisions
    • Only property/finances
    • Only specific personal/health care decisions
    • Only personal/health care decisions
  • State how guardian will engage and involve person in decision-making
  • Develop proposed person-centered plan
  • Reassess periodically for modification or restoration of rights”

SDM has become prominent in debates about how to apply human rights to areas of mental health and addiction law, policy and practice in which paternalism and substituted decision-making have traditionally dominated, whether formally (e.g. under guardianship or mental health civil commitment legislation) or informally (e.g. in healthcare settings or family situations in which decisions are effectively made for people).[21] By requiring that courts consider supportive decision-making, powers of attorney (which may be restricted), advance directives and SDM as alternatives to limited guardianship, the ABA hopes, as does MHA, to better preserve “the dignity and freedoms of people needing protection.”[22]

    1. State Legislation and Regulation in Support of SDM

Some states have begun requiring that SDM be considered in “limited” guardianships, which are routinely supervised by state courts. For e.g., the Colorado law requires the Court to specifically order a guardianship limited to the areas of impairment found by the court.[23] As of 2012, Washington State, Vermont, Minnesota, and Maine had all implemented various approaches to promoting and supporting SDM and other self-determination supports.[24] These state laws generally track with the ABA guidance discussed in section 3.1.3

    1. Veterans’ Administration (VA)

The Supreme Court holding in Olmstead v. LC protects people from forms of restrictive treatment not required for their care and treatment. Thus, “psychiatric patients [have] a right to be treated in the least restrictive alternative setting that me[ets] their needs,”[25] and restrictive treatment cannot be justified if a less restrictive alternative is appropriate. Lack of resources is not a defense. This paradigm applies to all government decision-making involving people with disabilities, including guardianship and similar proceedings. The Veterans’ Administration has the duty of evaluating the competency of veterans making decisions about care and benefits. The VA has implemented policy to favor SDM and limit government action predicated on the incapacity of the veteran to the least restrictive alternative:

“VA selects the most effective and least restrictive fiduciary arrangement. The most important consideration is whether or not the beneficiary can manage their benefits under supervised direct pay with limited VA supervision.”[26]

    1. The UK and Australia

Following the example of the UK National Health Service, the Victorian Branch of the Royal Australian and New Zealand College of Psychiatrists has adopted the Enabling Supported Decision-Making Project, incorporating an SDM model stressing that clinicians and people in recovery are partners from the outset, and power differentials are acknowledged, explored and addressed through SDM.  [27]

  1. Evidence in Support of SDC and SDM

Studies have shown that SDC and SDM are economically feasible tools to improve participant satisfaction with care as well as improve participant outcomes.[28] A general consensus is emerging that SDC and SDM are effective modalities to increase participant’s self-determination.[29]

    1. Human Services Research Institute (HSRI) (Florida, Utah)

Under contract with SAMHSA, the State of New York, and the Robert Wood Johnson Foundation, HSRI has analyzed the results of the self-determination programs in all six of the SDC pilot states and around the world. A research bibliography supports the positive evaluation of SDC.[30] HSRI has concluded that: “Self-direction has the potential to produce better outcomes that facilitate mental health recovery, including employment and housing stability, self-sufficiency, and engagement in mutual support and self- advocacy.”[31] The “research shows that, when given the opportunity, people with serious mental health conditions are quite capable of identifying non-traditional goods and services that support their well-being and independence.”[32] For example, HRSI’s “recent study of Florida Self-Directed Care showed that many self-direction participants used their monthly budgets to first meet their basic material needs, including dental and vision care and short-term housing assistance. With those basic needs taken care of, they were better positioned to focus on setting and achieving personal recovery goals.”[33]

The HSRI Utah study, published online in August of 2019, studied the results of Utah’s SDC program over the previous two years. The study found that:

  • Self-directing participants had greater increases than non-participants in their use of rehabilitation and outpatient treatment services.
  • Self-directing participants used an average of 63 more rehabilitation service hours than non-participants, and an average of 22 more outpatient treatment hours.
  • There were no differences between participants and nonparticipants in use of residential and emergency services.
  • Participants could spend up to $2,000 in project funds, but on average they spent less than half that amount, $902. The mandatory Support Brokerage service amounted to the largest of their expenditures, but participants also used their budgets to purchase a range of goods and services to support their recovery: The Special Needs category includes items such as birth certificates, ID cards, one-time utility payments, etc.31
    1. Texas Studies

A detailed Texas study, published in 2019, was lead by Dr. Judith Cook Director of the Center on Integrated Health Care & Self-Directed Recovery of the University of Illinois at Chicago, focused on people with severe mental illness in Dallas and surrounding counties receiving “package 3” services (just short of the full assertive community treatment model[34]).

This study is one of the first to implement and rigorously evaluate a public mental health SDC project. System clients were randomly assigned to SDC and services as usual and assessed at 12 and 24 months. Perceived recovery, psychosocial skills, self-esteem, coping mastery, autonomy support, somatic symptoms, employment and education indices all showed significant improvement in the SDC group. Satisfaction with mental health services was also significantly greater in the SDC group.

The study followed the basic features of mental health SDC. Participants began by developing person-centered plans for recovery. Next, they created individual budgets with line items for the purchase of services and goods corresponding to plan goals, which were reviewed and approved by program management. Participants received assistance from self-directed care staff acting as service brokers, who helped them develop plans and budgets and then aided them in selecting and securing needed services.

Unpacking this on her website, Dr. Cook explains that discussion and ongoing communication often is required to assure that the reason for the purchase follows the plan and budget and is reasonably related to the person’s recovery process. Staff discretion is eased, but not precluded.

The study concluded that, “self-directed care shows great potential for improving recovery outcomes while costing no more than traditional service delivery.” Compared to a control group, more positive clinical and rehabilitation outcomes, lower service use and costs, and greater service user satisfaction were found.[35]

Texas SDC participants:

  • had significantly lower somatic symptoms (i.e., physical manifestations of physiological distress such as dizziness, pain, nausea, shortness of breath) than controls, and this difference persisted across the 2-year study period,
  • had significantly higher levels of coping mastery than controls throughout the 24- month follow-up period,
  • had higher self-esteem than controls throughout the follow-up period,
  • had significantly higher levels of self-perceived recovery from serious mental illness than controls over time,
  • reported greater ability to ask for help, to rely on social support from others, and willingness to pursue recovery goals than controls over time, and
  • were more likely to perceive their service delivery system as client-driven than controls throughout the follow-up period. (emphasis in original), and

No between-group differences were found in total per-person service costs in years 1 and 2 or both years combined. However, self-directed care participants were more likely than control group participants to have zero costs for six of 12 individual services and to have lower costs for four. The most frequent nontraditional purchases were for transportation (21%), communication (17%), medical care (15%), residential (14%), and health and wellness needs (11%). Client satisfaction with mental health services was significantly higher among intervention participants, compared with control participants, at both follow-ups.

Thus, the study showed both that SDC improves participants' mental health and enhances their quality of life and that SDC is cost-effective. The Texas SDC demonstration as a whole was budget neutral.

    1. Florida Studies

Patrick Hendry, MHA’s Director of Consumer Affairs, was the state coordinator for the Florida Self-Directed Care Program in SW Florida for five years and was the Chair of the statewide FLSDC program for four years. The Florida program is the largest in the U.S. and the oldest pure SDC model. Hendry concludes that:

The evaluation revealed positive outcomes for self-directed care participants in terms of community integration and residential stability, both strong indicators of recovery and community functioning. Compared to non-participants, SDC participants also used significantly less crisis stabilization unit and other crisis support services. SDC participants had significantly higher numbers of assessments, medical services including psychiatry, outpatient psychotherapy services, and supported employment.[36]

The Florida program provided for a robust array of alternatives,[37] which were actively taken advantage of by participants:

[M]ost (81%) purchases were for non-traditional services, which included both recovery supports and recovery enhancements. However, the types of services purchased by participants varied between the two circuits. In Circuit 4, participants directed a little more than half (54%) of their budgets to pay for living expenses (food, housing, and utilities) and transportation. In contrast, a much smaller proportion (25%) of Circuit 20 participants’ expenditures was spent on these types of services. In addition, Circuit 20 directed a higher proportion of their budgets to traditional mental health services than did Circuit 4 participants (24% compared to 16%), and participants in both circuits used their budgets to purchase computers and computer accessories.[38]

Dr. Jennifer Spaulding-Givens studied the Florida SDC program for her 2011 doctoral dissertation. After a comprehensive historical review and a detailed description of the Florida SDC program, Dr. Spaulding-Givens concluded that:

Participants report suffering from a myriad of physical health problems in addition to their diagnosed psychiatric disorders. Florida SDC participants are also very poor and struggle to live independently. Flexible spending policies seem critical to address adequately participants’ most basic needs related to housing, transportation, and healthcare, which unmet present virtually insurmountable barriers to recovery. One caveat is that flexible spending should likely be tempered by recovery coaches’ efforts to collaborate with participants in order to cultivate new sources of revenue, ideally through work, which not only affords self-sufficiency but is empirically linked to recovery.

[Finally, and most significantly,] as participants begin to make their own choices, both good and bad, they gain in self-confidence and self-esteem and become more comfortable. They also learn that their coaches can provide needed support without coercion and control. (emphasis supplied)[39]

Dr. Cook, who spearheaded the SDC research in Texas, also studied consumer self-determination in Florida. In an article published in a peer- reviewed journal in 2008, she and her colleagues concluded:

Self-directed care programs give participants control over public funds to purchase services and supports for their own recovery. Data were examined for 106 individuals and showed that compared with the year before enrollment, in the year after enrollment, participants spent significantly less time in psychiatric inpatient and criminal justice settings and showed significantly better functioning. Of approximately $58,000 in direct expenditures by participants over 19 months of operation, 47% was spent on traditional psychiatric services, 13% on service substitutions for traditional care, 29% on tangible goods, 8% on uncovered medical care, and 3% on transportation. Early positive results of this pilot program support replication and evaluation elsewhere.39

  1. Call to Action

Mental Health America encourages public dialogue to support meaningful agency, autonomy, and choice for people in recovery from mental health and substance use conditions and in particular for participants in publicly-supported mental health and substance use recovery programs. The 2004 MHA issue brief, Consumer Control and Choice: An Overview of Self-Determination Initiatives for People with Psychiatric Disabilities,[40] provides greater detail on the history, elements and funding mechanisms for person-centered planning and self-determination initiatives.

MHA encourages affiliates, people with mental health and substance use conditions, and advocates to support the development of Self-Directed Care (SDC) and Shared Decision-Making (SDM) initiatives as described in this position statement that are culturally and linguistically humble and competent and driven by the concerns of people in treatment and their families and advocates. MHA emphasizes that under both the SDC and the SDM approaches, individuals must receive appropriate coaching and planning assistance to ensure that their choices will likely promote their recovery, supporting people with an integrated care team, not leaving them to seek out their own care.

MHA opposes initiatives aimed at reducing government resources or accountability for providing quality care, and will contest any effort to market such a proposal as a self- determination initiative.

Self-determination programs should begin with personal care and respite and expand to include a range of self-directed services as policy and funding evolve. MHA advocates these actions to increase self-determination of people in recovery from mental health and substance use conditions:

  • Education in SDM and evolving mental health and substance use disorder treatment and services is essential for clinicians and people in recovery and their families, as are policy, financing and planning efforts and administrative infrastructure that support this new paradigm of personal autonomy, agency and choice.
  • Decision aids and other decision support technologies also will be required, particularly in the arena of psychopharmacology and the routine medication visit where decisions are complex, often involving significant risks and benefits that impact quality of life. SDM could help level the playing field, giving people with mental health and substance use conditions independent access to unbiased, evidence-based information about treatment and recovery.
  • SDC programs should be implemented and brought to scale wherever feasible.
  • Embedding information technologies and support for using them in routine clinical and rehabilitation practice could re-engineer how practitioners and people with mental health and substance use conditions collaborate in SDM. These technologies could help amplify the voice of people with psychiatric disabilities, bringing the perspective of the individual to the center of the care team. Decision-support technologies could scale with relative ease, and the tools themselves could train and reinforce person-centered practice within the workflow. And activated, empowered participants and insureds who have higher expectations for collaborative care might in turn activate practitioners to engage in more collaborative care.
  • States should amend guardianship and conservatorship laws to limit the discretion of guardians and require SDM in justifying any action that affects theperson with a mental health condition.
  • As advocated by MHA Position Statement 23, Psychiatric Advance Directives.[41] states should amend existing advance directive laws for healthcare as needed to permit individuals to include specific provisions for mental health treatment.. Such legislation should be designed to enable people to choose the most important elements of the directive for them, including:
    • what types of treatment will be covered,
    • what events or determinations will trigger implementation, and
    • whether or not and under what circumstances the directive will be revocable.
    • Such legislation should also be based upon the recognition that, while the treatments authorized can be highly beneficial, even life-saving, for the individual, many treatments have serious side effects. Therefore, the decision to agree or not to agree in advance to such treatments or to authorize someone else to do so on one’s behalf is a serious one which should be accompanied by appropriate safeguards to insure that the decision is fully informed and free from coercion.
  • States and counties should incorporate self-determination into their existing policies and mandate and invest in self-determination initiatives, such as SDC and SDM.
  • Public health insurance plans should pursue funding mechanisms and quality improvement strategies that support SDC and SDM.
  • Private health insurance plans and provider groups should incorporate SDC and SDM into their benefit offerings, which could include using case management to assist with personal budgeting and investing in training and materials for a self-determination program.
  • MHA affiliates and other advocates should advocate for and support self-directed care initiatives, especially in substance abuse programs, where control has been the paramount value. As detailed in this position statement, both SDC and SDM programs are valuable components of a self- determination movement that shows great promise. Still, problems remain as providers resist the time commitment required for shared decision-making and the states and the federal governments struggle to bring SDC to scale. In addition to the priority actions listed above, we will need to:
    • Conduct outreach and establish enrollment procedures that support participation by a broad range of people who may want to consider SDC or SDM.
    • Develop adequate infrastructure, administrative capacities, and procedures to respond rapidly and flexibly to changes in participant status resulting from mental health crises, changes in physical health, or changing life circumstances.
    • Protect participants from coercion or exploitation and protect them from harm during acute psychiatric episodes.
    • Ensure that the quality of mental health and substance use disorder treatment and related integrated healthcare is maintained and improved.
    • Establish reasonable standards so that participants know well in advance which purchases are approvable.
    • Monitor participants' spending and maintain programs' total costs (i.e., variable plus fixed costs) at acceptable levels.
    • Monitor participants through a collaborative process that maximizes each participant’s sense of autonomy and agency while counseling adherence with planning and recovery objectives.
  1. Effective Period

The Mental Health America Board of Directors approved this policy on 2020.  It will remain in effect for five (5) years and is reviewed as required by the Public Policy Committee.

Expiration: December 31, 2025

 

Sources


[1] See MHA Position Statements 11, In Support of Recovery-based Systems Transformation, https://www.mhanational.org/issues/position-statement-11-support-recovery-based-systems-transformation  and 17, Promotion of Mental Wellness, https://www.mhanational.org/issues/position-statement-17-promotion-mental-wellness

[2] Substance use must be handled differently because money can be used to buy substances, but other approaches are being studied. Thus, SAMHSA/CSAT's national Access to Recovery Demo explored SDC for people with SUDs using vouchers. The Access to Recovery Toolkit describes the model in greater detail. PPHF-2014-Access to Recovery (PPHF-2014), SAMHSA, https://www.samhsa.gov/sites/default/files/grants/pdf/ti-14-004.pdf

[3] Our Completed Research & Evaluation Studies, Center On Integrated Health Care & Self-Directed Recovery, https://www.center4healthandsdc.org/completed-research.html

[5] Elwyn, G., Edwards, A,,  Kinnersley, P. & Grol, R., Shared Decision Making and The Concept of Equipoise: The Competences of Involving Patients in Healthcare Choices, Br. J. Gen. Pract. 50(460):892-9 (2000), https://www.ncbi.nlm.nih.gov/pubmed/?term=PMC1313854

[6] Patricia E. Deegan, Ph.D., The Journey to Use Medication Optimally to Support Recovery, Psychiatry Online, https://doi.org/10.1176/appi.ps.201900506

[7] Robert E. Drake Dartmouth Psychiatric Research Center, Dartmouth Medical School, Deegan, P.E. & Rapp, C., The Promise of Shared Decision Making in Mental Health, Psychiatric Rehabilitation Journal 34(1):7–13 (2010), https://doi.org/10.2975/34.1.2010.7.13

[8] MHA Position Statement 22, Involuntary Mental Health Treatment, https://www.mhanational.org/issues/position-statement-22-involuntary-mental-health-treatment

[9] E.g., Jeste, D.V., Eglit, G.N.L., Palmer, B.W., Martinis, J.G., Blanck, P. & Saks, E.R., Supported Decision- Making in Serious Mental Illness, Psychiatry, 81(1):28-40 (2018), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6093283/

[10] To fully achieve the goal of enhancing individual autonomy, implementation of [supported decision-making] must involve several core elements: (1) information is presented to the individual (including possible alternatives), (2) the individual consults with supports as he or she prefers, (3) the individual reaches a decision, and (4) the decision is documented, carried out, and legally enforceable. Examples of questions around which to engage an individual with SMI in a decision may be as follows: If the decision pertains to taking a prescribed antipsychotic medication, the questions may include: What do you think about this medication? Have you ever taken it before and what was it like? Have you taken different medications and what were they like? How do you understand the risks and benefits of this treatment and what do you think about those in your own case? What is your general attitude about taking medications? Are there alternatives (drugs or other treatments) that you would rather try first? How do your values, desires, and goals in general bear on this issue? Jeste, D.V., Eglit, G.N.L., Palmer, B.W., Martinis, J.G., Blanck, P.& Saks, E.R., Supported Decision-Making in Serious Mental Illness, Psychiatry 81(1):28-40 (2018), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6093283/

[11] Simmons, M. B., & Gooding, P. M. (2017). Spot the Difference: Shared Decision-Making and Supported Decision-Making In Mental Health, Irish Journal of Psychological Medicine 34(4):275-286 (2017), https://www.cambridge.org/core/journals/irish-journal-of-psychological-medicine/article/spot-the-difference-shared- decisionmaking-and-supported-decisionmaking-in-mental-health/6730E25294159BAAD5E85B98EE40F919  https://mail.google.com/mail/u/0/?zx=qr9mra9n4rub#inbox?projector=1

[12] MHA Position Statement 22, Involuntary Mental Health Treatment https://www.mhanational.org/issues/position-statement-22-involuntary-mental-health-treatment

[13] See, generally, MHA Position Statement 23, “Psychiatric Advance Directives.” https://www.mhanational.org/issues/position-statement-23-psychiatric-advance-directives

[14] President's New Freedom Commission on Mental Health, Final Report to the President (2003) https://govinfo.library.unt.edu/mentalhealthcommission/reports/reports.htm

[15] Slade, E., Feasibility of Expanding Self-Directed Services to People with Serious Mental Illness,”  Prepared for Office of Disability, Aging and Long-Term Care Policy Office of the Assistant Secretary for Planning and Evaluation U.S. Department of Health and Human Service (2013), https://aspe.hhs.gov/system/files/pdf/108481/ExpSDSFeas.pdf

[16] Alakson, V., The Contribution of Self-Direction to Improving the Quality of Mental Health Services (2007), Prepared for the 2006/2007 Harkness Fellow Office of the Assistant Secretary for Planning and Evaluation U.S. Department of Health and Human Services, https://aspe.hhs.gov/basic-report/contribution-self-direction-improving-quality-mental-health-services

[17] U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation, Feasibility of Expanding Self-Directed Services to People with Serious Mental Illness (2013), https://aspe.hhs.gov/report/feasibility-expanding-self-directed-services-people-serious-mental-illness

[18] American Bar Association, Commission On Disability Rights Section of Civil Rights And Social Justice Section of Real Property, Trust And Estate Law Commission On Law And Aging, Report To The House of Delegates (2017), https://www.americanbar.org/content/dam/aba/administrative/law_aging/supported-decision-making-resolution-final.pdf; Guardianship and Supported Decision-Making (2016), American Bar Association, https://www.americanbar.org/groups/law_aging/resources/guardianship_law_practice

[19] Simmons, M. B., & Gooding, P. M. Spot the Difference: Shared Decision-Making and Supported Decision-Making In Mental Health, Irish Journal of Psychological Medicine 34(4):275-286 (2017), https://doi.org/10.1017/ipm.2017.59

[21] Drake, R.E. & Deegan, .E., Shared Decision-Making is an Ethical Imperative, Psychiatr Serv. 60(8):1007 (2009), https://www.researchgate.net/publication/26710583_Shared_Decision_Making_Is_an_Ethical_Imperative

[22] American Bar Association, Commission On Disability Rights Section of Civil Rights And Social Justice Section of Real Property, Trust And Estate Law Commission On Law And Aging, Report To The House of Delegates (2017), https://www.americanbar.org/content/dam/aba/administrative/law_aging/supported-decision-making-resolution-final.pdf

[23] Frequently Asked Questions, Ability Connection Colorado, https://www.abilityconnectioncolorado.org/guardianshipallianceofcolorado/faqs/

[24] Shared Decision Making: Advancing Patient-Centered Care through State and Federal Implementation, National Academy for State health Policy, https://nashp.org/shared-decision-making-advancing-patient-centered-care-through-state-and-federal/

[25] Paul S. Appelbaum, M.D., Law & Psychiatry: Least Restrictive Alternative Revisited: Olmstead's Uncertain Mandate for Community-Based Care, Psychiatric Serv. 50(10): 1271-1280 https://doi.org/10.1176/ps.50.10.1271

[26] U.S. Department of Veterans Affairs, Veterans Benefits Administration, Fiduciary ProgramI, https://benefits.va.gov/BENEFITS/factsheets/fiduciary/FiduciaryFactSheet.pdf

[27] The Royal Australian & New Zealand College of Psychiatrists, Enabling supported decision-making (2018), https://www.ranzcp.org/files/branches/victoria/enabling-supported-decision-making-vic-branch-posi.aspx

[28] See Cook, J. A., Shore, S., et al,,, Burke-Miller, J. K., Jonikas, J. A., Hamilton, M., Ruckdeschel, B. & Bhaumik, D., Mental Health Self-Directed Care Financing: Efficacy in Improving Outcomes and Controlling Costs for Adults With Serious Mental Illness, ,” Psychiatric Serv. 70(3):191-201 (2019), https://doi.org/10.1176/appi.ps.201800337; The Research, Human Services Research Institute https://www.mentalhealthselfdirection.org/research

[29] See The Research, Human Services Research Institute, https://www.mentalhealthselfdirection.org/research

[30] The Research, Human Services Research Institute, https://www.mentalhealthselfdirection.org/research

[31] Demonstration and Evaluation of Self-Direction in Mental Health, Human Services Research Institute, https://www.hsri.org/project/demonstration-and-evaluation-of-self-direction-in-mental-health

[32] Demonstration and Evaluation of Self-Direction in Mental Health, Human Services Research Institute, https://www.hsri.org/project/demonstration-and-evaluation-of-self-direction-in-mental-health

[33] Demonstration and Evaluation of Self-Direction in Mental Health, Human Services Research Institute, https://www.hsri.org/project/demonstration-and-evaluation-of-self-direction-in-mental-health

[34] See, e.g., Assertive Community Treatment, Case Westerns Reserve University, Center for Evidence-Based Practices, https://www.centerforebp.case.edu/practices/act

[35] Cook, J. A., Shore, S., Burke-Miller, J. K., Jonikas, J. A., Hamilton, M., Ruckdeschel, B. & Bhaumik, D., Mental Health Self-Directed Care Financing: Efficacy in Improving Outcomes and Controlling Costs for Adults with Serious Mental Illness, Psychiatric Serv. 70(3):191-201 (2019), https://doi.org/10.1176/appi.ps.201800337;

[36] See Hendry, P., The Florida Self-Directed Care Program: A Practical Path to Self-Determination (2008), written through a contract with the National Empowerment Center, Inc., www.power2u.org, https://power2u.org/wp-content/uploads/2017/09/The-Florida-Self-Directed-Care-Program.pdf

[37] Services included:

  • Psychological Assessment
  • Medical services (i.e., Psychiatric Evaluation, Medication Management)
  • Individual and group therapy provided by a licensed mental health professional
  • Supported Employment
  • Co-pays for Clinical Recovery Services purchased with Medicaid or Medicare funds
  • Transportation
  • Massage Therapy as a form of touch therapy to assist an individual overcome issues documented by a licensed mental health professional
  • Forms of Art Therapy
  • Occupational, speech, and physical therapy when recommended by a licensed mental health professional
  • Services related to developing employability and/or productivity that will lead to employability
  • Smoking cessation activities under the supervision of a medical doctor
  • Non-cosmetic dental work
  • Hearing aids
  • Non-cosmetic eye glasses and non-disposable contacts once per year, unless otherwise noted by a licensed eye care professional
  • Haircuts from a professional not to exceed once every 3 months
  • Make-up lessons
  • Facial cosmetic and make-up products for the purposes of camouflaging medical conditions, such as facial scars, burns, etc. and for the purposes of seeking or participating in employment and/or other productive activities
  • Tutoring
  • Face-to-face and distance learning educational classes
  • Pet ownership, initial costs only (a maintenance plan must be submitted with action plan that details the ability to have the pet in the current place of residence, food and health upkeep, and care for the animal in the event of the individual’s absence)
  • Time-limited assistance to secure or maintain a more independent living arrangement (a maintenance plan must be submitted with action plan that details long-term financial ability to maintain the living arrangement, i.e., rent, utilities, living needs, groceries). It is the participant’s responsibility to ensure that payments are made on time.
  • Time-limited assistance with vehicle repair for purposes of employment and/or transportation to access Clinical Recovery Services
  • Entertainment items (i.e., movie tickets) and restaurant dinners if recommended by a licensed mental health professional.

[38] Spaulding-Givens, Jennifer, Florida Self-Directed Care: An Exploratory Study of Participants' Characteristics, Goals, Service Utilization, and Outcomes (2011), https://www.researchgate.net/publication/254673342_Florida_Self-Directed_Care_An_Exploratory_Study_of_Participants'_Characteristics_Goals_Service_Utilization_and_Outcomes

[39] Spaulding-Givens, Jennifer, Florida Self-Directed Care: An Exploratory Study of Participants' Characteristics, Goals, Service Utilization, and Outcomes (2011), https://www.researchgate.net/publication/254673342_Florida_Self-Directed_Care_An_Exploratory_Study_of_Participants'_Characteristics_Goals_Service_Utilization_and_Outcomes

[40] National Mental Health Association, Consumer Control and Choice: An Overview of Self-Determination Initiatives for Persons with Psychiatric Disabilities http://www.mentalhealthamerica.net/sites/default/files/Consumer_Control_IssueBrief.pdf