Abstract
Keywords
Introduction
Societal change is all around us. From how we communicate using cell phones, email and the Internet to the way we have rapidly adopted Uber and Lyft car sharing rides, change is moving faster and faster. Government and the disability service systems have been slow to adapt to these changes. Over the past several years, significant changes have occurred at the Federal level that promote inclusion and integration of people with disabilities into society. These include the Supreme Court Olmstead decision, the Workforce Innovation and Opportunity Act (WIOA), the Home and Community Based Services (HCBS) Settings Final Rule, and several key Department of Justice (DOJ) cases that further interpret the Americans with Disabilities Act (ADA). These changes largely reflect law, policy and regulation. The alignment of these game changers creates unprecedented opportunities for employment for people with disabilities.
Today, we find ourselves poised at almost the same place we were fifty years ago when the field successfully confronted institutionalization. In 1969, the number of people with Intellectual and Developmental Disabilities confined in state institutions peaked at about 194,000. Since that time, more than 150,000 people moved out of institutions into small community integrated settings and gained lives that were better in virtually every way we know how to measure (Downey & Conroy, in press). Today, the number of people remaining in state institutions is down to about 22,000. Eleven states have become institution free (AK, AL, DC, HI, IN, ME, MI, MN, OR, NH, NM, RI, VT, WV), with several additional states on their way in the next two years.
Yet, having made tremendous gains in reducing segregation in state institutions, we now find ourselves addressing segregation in the community in the form of day services.
This policy paper focuses on employment and discusses how this new framework can be used to significantly advance competitive integrated employment for people with disabilities much as occurred in residential services over the last 50 years. The term “Informed Choice 1 is being used here because it is codified in most of current law, policy and regulations. It is included in each of the current landmark cases interpreting the ADA (for additional information on the ADA, see www.ada.gov). Informed choice is a term that is part of “supported decision-making” 2 and also includes a duty for affirmative efforts on the part of government (for additional information on Supported Decision-Making, see www.supporteddecisions.org).
Despite national and state policies promoting competitive integrated employment, a large percentage of adults with significant disabilities remain in facility-based sheltered workshops or non-work programs – also often segregated – even though a majority of individuals would either like employment outside sheltered workshops or to be able to at least consider it an option (Butterworth, et al., 2013). The National Core Indicators data brief of February 2014 indicates that 74% of those who indicate their desire for a job do not have community employment as a goal in their service plan (Hall et al., 2011).
Often people are employed in sheltered workshops earning less than minimum wage with little chance of advancement because of a lack of understanding and experience of the range of employment options or because they have not been given the opportunity and support to choose employment (Beckwith, 2016). Cimera found that “the relative value of what sheltered employees earned actually decreased by 40.6% since the 1980s while the relative value of wages earned by supported employees increased by 31.2% ” (2012, p.3).
Even when given a choice, many people with disabilities often have not had the opportunity to experience competitive integrated employment, or, the choices offered are framed by professionals, or well-meaning family members who do not think the person can succeed in integrated employment, or that the perceived costs of doing so are too high. In other words, people have not been given the opportunity to make an informed choice.
“Informed choice” is something that all people require. It is based on the principle of presumed competence, that every person has the ability and the right to make choices and act on those decisions. It encompasses the Dignity of Risk that Perske (1972) enumerated in his ground-breaking article. Individuals who have significant disabilities may express their preferences in non-traditional ways and it is the responsibility of people closest to the person and systems providing services to support individuals well in making decisions and to provide access to quality employment in accordance with that decision. The absence of these requirements deprives the individual of his or her inalienable right to self-determination, and more fundamentally, to access lifestyle options that provide fair compensation and full participation in community life.
Evidence suggests that individuals who have full information and the opportunity to experience different options are likely to choose an integrated option (Migliore, Mank, Grossi, & Rogan, 2007). The DOJ has given additional guidance for what the obligations are when someone has ostensibly chosen segregation; recognizing that when provided decent opportunities with support, people with disabilities rarely choose segregation or socially devalued status.
“Public entities that have traditionally relied on segregated work settings should take affirmative steps to remedy this history and to ensure that individuals have a real opportunity to make an informed choice to work in integrated settings. Affirmative steps may include providing information about the benefits of working in integrated employment settings; providing vocational and situational assessments, career development planning, and discovery in integrated employment settings; arranging peer-to-peer mentoring; facilitating visits, conducting job exploration, interest inventories, and work experiences in integrated job settings; and providing benefits counseling, and access to benefits plans, to explain the impact of competitive work on an individual’s public benefits.”
Statement of the Department of Justice on Application of the Integration Mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C. to State and Local Governments’ Employment Service Systems for Individuals with Disabilities https://www.ada.gov/olmstead/olmstead_guidance_employment.pdf.
Informed choice grew out of the recognition of peoples’ rights being violated and perverted during the early deinstitutionalization cases e.g. Halderman v. Pennhurst (1977), Wyatt v. Stickney (1977), People First v. Arlington Developmental Center (1995). In each of these cases, affirmative steps were taken to ensure that people were making an experientially based informed choice about living in the community after they had been segregated from community life. In the earliest presentation, to fuse the emerging legal principles with the understandings in human services, Civil Rights Attorney, David Ferleger, considered what he called “the place of choice” and articulated questions to be asked on “each occasion where we believe we are providing, presenting or witnessing a ‘choice”’ (1995, p. 5). He also highlights how families may want something different from what the Individual may want and suggestions for how to reconcile this. 3
In People First v. Arlington Developmental Center, Federal District Court Judge McCalla found that even Individuals under Tennessee Guardianship “... retain the rights of other citizens and that parents and guardians lack the power to waive the fundamental rights of their children and wards.” (1995, p. 12).
In what became a landmark case, the Federal Court in Oregon put a spotlight on the common misunderstanding that providing informed choice is as simple as waiting for the person to initiate or express what they want, without having a frame of reference for doing so. “Due to their disability, many individuals with [intellectual or developmental disabilities] may not ask for supported employment services because they are not aware of them or because they are not aware that they have any choices as to services that they are entitled to receive” (Lane v. Brown, 2012).
The term, informed choice, now appears in laws and regulations governing Vocational Rehabilitation, Medicaid, Workforce Development, and Education programs. The concept has often been included in State Employment First initiatives and in legal decisions based on the Americans with Disabilities Act and the US Supreme Court Olmstead v L.C. decision.
The presumption that informed choice will lead to competitive integrated employment is now reflected in many State laws and regulations. The term appears around Employment First, a national systems-change effort to align policies, practices, and funding to prioritize competitive, integrated employment and other community-based services that lead to optimal inclusion and socioeconomic advancement of people with disabilities as the priority outcome of day and employment services.
Nevertheless, the construct of informed choice has not been well defined and many states, providers, and direct service professionals misinterpret or even ignore the importance of informed choice altogether. This is often complicated by the lack of skillful person-centered planning, and the impoverishment of experiences that people with disabilities have been subject to. If the individual has greatly limited life experiences, it is not an informed choice to only tell the person what his/her options are.
The following sections of this policy brief will guide state policy makers in using the informed choice framework as they attempt to transform their service systems to comply with recent mandates for competitive integrated employment. Section 1 is the Introduction, Section 2 defines Informed Choice, Section 3 describes the mandate for states to facilitate informed choice in laws, regulations and court decisions, and Section 4 details the characteristics of an employment system to ensure informed choice. The Appendices further describe these features.
Defining informed choice
Informed choice in employment entails knowledge and experience with appropriately high expectations for full community integration, valued social roles, normative routines and rhythms appropriate to the individual’s age. Real choice requires multiple options that reflect the integration mandate of the ADA. The term “choice” refers to decision between multiple meaningful viable options.
Being provided the choice of either McDonalds or Burger King is not informed choice. ‘Viable’ alone is not enough – both McDonalds and Burger King are ‘viable’ but essentially equivalent. The term “choice” refers to a meaningful decision between multiple, significantly distinguishable viable options. Choice incorporates the importance of autonomy, control, self-determination and having a variety of options to choose from.
The Department of Justice (DOJ) has taken a strong position about what is required for someone to be able to make an “informed choice.” It is not just simply asking a person (or their guardian/family) if they want to leave a segregated setting. It requires affirmative action on the part of government. It includes active engagement, in-reach and providing experiential opportunities (like opportunities to visit integrated settings, to meet with providers of integrated services, to speak with peers and other families who have had loved ones supported in integrated settings the community, etc.). In their 2011 statement on integration, DOJ defines these requirements as follows:
Individuals must be provided the opportunity to make an informed decision. Individuals who have been institutionalized and segregated have often been repeatedly told that they are not capable of successful community living and have been given very little information, if any, about how they could successfully live in integrated settings. As a result, individuals’ and their families’ initial response when offered integrated options may be reluctance or hesitancy. Public entities must take affirmative steps to remedy this history of segregation and prejudice in order to ensure that individuals have an opportunity to make an Informed Choice. Such steps include: providing information about the benefits of integrated settings; facilitating visits or other experiences in such settings; offering opportunities to meet with other individuals with disabilities who are living, working and receiving services in integrated settings, with their families, and with community providers. making reasonable efforts to identify and addresses any concerns or objections raised by the individual or another relevant decision-maker.
4
Informed choice is generally considered to have the following components:
For a person with a cognitive or intellectual disability, it might require giving the person a bit longer to learn the job, or structuring the task or the environment to make it easier to learn the job tasks. For a person with a psychiatric disability, a flexible schedule may be required in order to see a therapist or to go to doctor’s appointments, to support the person in their recovery. Sometimes people need time off for hospitalizations, which presents similar challenges to the employer as non-disabled employees who go on family and medical leave or who have other reasons for being out of the workforce on a temporary basis. In the end, employers are accommodating people who are labeled and not labeled all the time.... In fact, everyone needs performance enhancements. Employers make accommodations for skilled individuals who have no obvious disability; it’s not very different from accommodating a person with a disability. An employer wants as much functionality out of an employee as possible. This is true for all employees.
5
Mandates for states to facilitate informed choice in laws, regulations, court decisions and employment first initiatives
The focus on informed choice was a logical extension of remedies for rights restrictions and violations of people’s civil and human rights. For instance, in Halderman v Pennhurst (1977), the Hearing Master was appointed to provide the opportunity for individuals and their families to consider and object to specific proposed community settings. The process included participation in planning, visits to the proposed home, and meeting potential roommates. This additional safeguard was provided in the context of the federal court’s groundbreaking constitutional decision that “given appropriate community facilities, all the residents at Pennhurst, even the most ‘profoundly retarded’ with multiple handicaps, should be living in the community (Halderman v. Pennhurst (1983)).
In the long running Federal Court case, Wyatt v Stickley, the Judge ruled that “An ‘informed choice’ might include the opportunity to visit community sites, talk with the providers, talk with the other consumers, visit community workshops and jobs, and have a trial placement in the living arrangement. Habilitation and normalization require that the plaintiffs have this choice” (1997). These cases were the frontrunners and became the standards of what constituted informed choice.
Statutory
Over the past few decades the concept of informed choice has emerged in other laws, decisions and regulations that underpin the type of services and supports provided today. Recent guidance issued by the U.S. Department of Justice clarifies the meaning of the ADA and Olmstead as a framework for promoting true social integration and meaningful choices that are reflective of cultural norms.
In 1990, Congress enacted the ADA “to provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities.” In passing the ADA, Congress recognized that “historically, society has tended to isolate and segregate individuals with disabilities, and, despite some improvements, such forms of discrimination against individuals with disabilities continue to be a serious and pervasive social problem.” Therefore, the ADA and its Title II regulations require public entities to “administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” The preamble to the “integration mandate” regulation explains that “the most integrated setting” is one that “enables individuals with disabilities to interact with nondisabled persons to the fullest extent possible...”
In Olmstead, the Supreme Court, interpreting the ADA and its integration mandate, held that Title II prohibits the unjustified segregation of individuals with disabilities. The Supreme Court held that public entities are required to provide community-based services to persons with disabilities when (a) such services are appropriate; (b) the affected persons do not oppose community-based treatment; and (c) community-based services can be reasonably accommodated, taking into account the resources available to the entity and the needs of others who receive disability services from the entity.
Statement of the Department of Justice on Application of the Integration Mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C. to State and Local Governments’ Employment Service Systems for Individuals with Disabilities.
https://www.ada.gov/olmstead/olmstead_guidance_employment.pdf
Since first appearing in the 1992 amendments to the Rehabilitation Act of 1973, the concept of informed choice has been closely linked to competitive integrated employment outcomes. For example, the U.S. Department of Justice relies on informed choice to determine if an individual wants integrated employment. The Rehabilitation Act ties informed choice to individual dignity and the pursuit of meaningful careers (29 U.S.C. §701 (c)(1)). Informed choice is embedded in the person-centered planning process for Home and Community Based Waiver Services under Federal Medicaid policy guidance, where recent requirements clearly indicate competitive integrated employment is the preferred outcome (42 CFR 441.301(c)(2)(i)).
Workforce innovation and opportunities act (WIOA)
In 2014 Congress passed the Workforce Innovation and Opportunities Act (WIOA) establishing competitive integrated employment for people with disabilities as a national priority. The explicit goal of the law is to increase competitive integrated employment. The law defines employment for people with disabilities as Competitive Integrated Employment (CIE). It redefined competitive employment as fully integrated, in synch with what was required by the Lane case. The law requires that people with disabilities be paid the same wages and have the same benefits as people without disabilities, and to interact with coworkers and get the same opportunities for career advancement as coworkers without disabilities. It substantially restricts the use of subminimum wages, especially for youth. WIOA requires state agencies such as Vocational Rehabilitation, Medicaid, Departments of Education, and State Developmental Disability Authorities to work together and to prioritize CIE and to address disincentives to employment for people with significant disabilities.
States have already made positive changes consistent with WIOA. Vermont has eliminated the use of sheltered workshops (Stockton, 2014) and Massachusetts has stopped funding sheltered workshops as of August 2016 (NASDDDS, 2016).
New Hampshire was the first state to ban subminimum wage employment in 2015, Senate Bill 47 (Carlson, 2015). The Maryland General Assembly followed this example on May 19, 2016 with the Ken Capone – Equal Employment Act (2016), eliminating the use of subminimum wage. The bill was named after Ken Capone, a former worker in a sheltered workshop and a Board officer of Maryland’s Protection and Advocacy agency (Grunberger, 2016).
Legal action
In recent years, the DOJ has brought additional ADA/Olmstead cases to further clarify the application of the ADA to non-residential settings, employment and transition from school to work services (see Appendix B). Two such cases are described below: Lane v. Brown and U.S. v. Rhode Island.
For states to authentically offer real choice, often systems change is necessary to build the capacity to support the choices people actually want (real homes, real jobs, unpaid relationships, friends). Regarding employment, the Department of Justice has advised states: “to continue to avoid unnecessary segregation for the long term, states addressing a history of segregated employment should engage in affirmative efforts at system transformation” (U.S. Department of Justice, 2011, p. 12).
In addition, many youth with Intellectual and Developmental Disabilities in public schools were not offered timely and adequate services to allow them to make informed choices about transitioning to work in integrated settings after graduating from or exiting secondary school. The State also frequently failed to ensure that transition-age youth with Intellectual and Developmental Disabilities were informed of alternatives to working in segregated sheltered workshops.
The State’s failure to prepare youth with Intellectual and Developmental Disabilities to make an informed choice about postsecondary work in integrated settings was exemplified by the fact that some schools operated sheltered workshops on school premises or had students perform activities that were similar to those performed in sheltered workshops. Few schools actually exposed students with I/DD to, or prepared them for, typical jobs in the community. The State’s failure to prepare students with I/DD for integrated employment resulted in these students’ acculturation and training in segregated sheltered workshops, and often led to permanent placement in segregated sheltered workshops.
This case was the first in the nation to directly hold that the ADA applies to employment settings and requires States and other public entities to provide employment services in integrated settings rather than in segregated sheltered workshops. In crafting the remedy, the vision for all people with developmental disabilities in Oregon was to have access to the same opportunities and choices as Oregonians without disabilities.
In 2015, the Plaintiffs and the United States entered into a Settlement Agreement with the State of Oregon, as well as other named state officials to resolve all violations of the Americans with Disabilities Act (ADA), and the Rehabilitation Act of 1973. The Settlement Agreement incorporated an Oregon Executive Order to “improve Oregon’s delivery of employment services with the goal of achieving competitive integrated employment for individuals with intellectual and developmental disabilities, consistent with their abilities and choices.” 6 The Agreement provides that all individuals with I/DD will be provided a Career Development Plan, that all those who prefer integrated employment will be provided supported employment services, that over 1,100 individuals will receive Competitive, Integrated Employment, and that at least 4,900 youth will be offered employment services in an integrated setting. The Agreement also raised expectations for people with disabilities to work in real jobs for real pay, by requiring that integrated employment be compensated at minimum wage or better, that individuals have supports that allow them to work at least 20 hours/week, and that they receive the same pay, benefits, interactions with co-workers, and opportunities for advancement as people doing the same or similar work who do not have disabilities.
The Rhode Island Consent Decree also underscores the importance of informed choice and provides clear evidence that, although most of the Olmstead litigation is focused on residential settings, its requirements also apply to employment and day settings: “ ....individuals with I/DD will be offered meaningful options for postsecondary Supported Employment and Integrated Day Services ... ” and “(s)uch individuals and their families must be provided information through the person-centered planning process sufficient to make a meaningful informed choice between such services and remaining in school” (2014, p. 6).
The Consent Decree makes it clear that competitive, integrated employment is the preferred option. Segregated settings such as facility-based work (e.g. sheltered workshops), group enclaves, mobile work crews, time-limited work experiences or facility-based day programs are permissible only after an individual has: 1) participated in at least one vocational or situational assessment, 2) completed one trial work experience in an integrated work setting, 3) received outreach, education, and support services, and a benefits counseling consultation. Individuals in segregated settings must be reassessed twice a year to ensure that they have a meaningful opportunity to choose Supported Employment Services in an integrated work setting.
Significant changes in Federal Policies and Regulations further support people with disabilities having access to the same choices and opportunities as people without disabilities, and to have the chance to live full lives in the community. Two important examples are: 1) HCBS Final Settings Rule and 2) WIOA.
While these landmark DOJ cases were being litigated, important regulatory and policy changes were occurring that contained the elements of self-determination, informed choice, independence and integration to fully implement the proposed remedies of the cases on a national basis.
The combination of the legal cases and changes in public policy present unprecedented opportunities to significantly advance competitive integrated employment for achieving true community integration and a full life.
Regulatory
Centers for Medicaid and Medicare – Home and Community Based Services In March 2014, the Home and Community Based Services (HCBS) Final Settings Rule, issued by the Centers for Medicaid and Medicare (CMS) became effective. The Final Rule explicitly set affirmative obligations to States to come into compliance with the ADA and Olmstead through community integration and divesting from segregated programs.
The Final Rule requires that people receiving services through Medicaid HCBS waiver programs have full access to community life and services in the most integrated setting. (https://www.federalregister.gov/articles/2014/01/16/2014-00487/medicaid-program-state-plan-home-and-community-based-services-5-year-period-for-waivers-provider-based-services-5-year-period-for-waivers-provider).
The Final Rule required the States to come into compliance within 5 years (March, 2019). While integration was already required under the ADA and Olmstead, for the first time, States were obligated to take the following specific action steps:
Develop a Transition Plan to divest from segregation and those services that are isolating from the broader community. The plan must: Evaluate all of the HCBS funded services to determine those that are integrated or segregated according to the newly released HCBS standards detailing isolating services. The people receiving services have to be included in the assessment process and can challenge the assessments. These processes and tools have to be open, public and transparent. Address building capacity to ensure every Individual be given an option of a non-disability specific setting (like employment in a competitive job). Share the plan widely with the broader public and obtain public input from a broad range of constituents into the Plan. Be submitted to CMS for review and feedback. Be revised based on CMS feedback. Be approved by CMS in order to continue to receive federal funds.
Since issuance of the Final Rule, CMS has provided additional Implementation Guidance to the states (Incentives to Fund Outcomes). The Reviews of the Transition Plans by CMS have been comprehensive. To date, only Tennessee has received final approval of its state Transition Plan. To learn more about the Final Rule and/or track its implementation, see HCBS Advocacy website www.hcbsadvocacy.org.
The Final Rule expectations include the following: Supporting people with disabilities to have lives similar to people without disabilities. Providing opportunities for true integration, independence, choice, and self-determination in all aspects of life – where people live, how they spend the day, and real community membership. Ensuring quality services that meet people’s needs and help each person to achieve goals identified through person-centered planning.
The Final Rule provides an unprecedented opportunity to: Expand capacity of more integrated and individualized services. Move state systems away from outdated, segregated service models. Help states comply with their obligations under Olmstead.
The Final Rule also: Supports access to the greater community. Provides opportunities to seek employment and work in competitive integrated settings, engage in community life, and control personal resources. Requires settings are selected by the individual from among setting options, including non-disability specific settings. Optimizes individual initiative, autonomy, and independence in making life choices. Facilitates individual choice regarding services and supports, and who provides them. Individuals must be given an option of a non-disability specific setting (like employment in a mainstream job). States can require all day services (including pre-vocational services) to be community-based.
States are required to assess the following questions regarding employment settings: Do they “provide individuals with the opportunity to participate in negotiating his/her work schedule, break/lunch times and leave and medical benefits with his/her employer to the same extent as individuals not receiving Medicaid funded HCBS?” Is the individual receiving the “right service” if competitive integrated employment is the desired outcome?
Some day settings will need to be closely examined as potential day “settings that isolate” – sheltered workshops, facility-based day habilitation, adult day health, and day treatment programs.
Employment First State Initiatives. “Employment First,” the idea that competitive employment in an integrated setting should be the priority outcome for people with disabilities, is a national movement. Currently 32 states have Employment First Legislation, executive orders or official policies. Another 17 states have employment first-type initiatives but no official policy. Informed choice is a key component of Employment First. For more information see http://employmentfirst.leadcenter.org/
Systems that support informed choice
The concept of informed choice is often confused by professionals and sometimes even used by the service system to support segregation.
Most supports are administered by state Intellectual/Developmental Disability agencies with funding from Medicaid, as part of Medicaid Home and Community-Based Waivers, Vocational Rehabilitation programs, local education agencies and, to a lesser extent, state workforce agencies.
These supports are provided by a network of over 8,000 community rehabilitation providers (CRPs) (Butterworth, et al., 2013). The CRPs are staffed with direct support professionals (DSPs) often referred to as employment specialists, job developers, job coaches, or employment consultants who identify the job seekers’ preferences and needs, identify employers, negotiate job descriptions, facilitate the transition, and provide follow-up supports.
For people to be successful in obtaining CIE, the funders, the CRPs, and the DSPs need to engage in affirmative steps to facilitate the individual’s ability to make an informed choice.
In order to do this well, systems that tend to be more effective in supporting people include the following characteristics (See Table 1):
Finally, states that effectively support informed choice structure funding in ways that drive outcomes. Such funding systems must allocate funds in a way that does not restrict choice, gives individuals a maximum amount of control, and supports a full range of options in the community. In practice this means the following: Other funding approaches can enhance informed choice. For example, the state may have an outcome-based funding arrangement where at least some of a provider’s compensation is contingent upon reaching agreed-upon outcome performance measures. This approach creates an incentive for swift achievement of employment goals, and reinforces the principles of rapid job placement, consumer choice, and retention through natural supports. (Hall, Freeze, Butterworth, & Hoff, 2011). A funding structure that pays providers on a day rate is completely incompatible with informed choice and should be avoided.
Practices that support informed choice
A number of states have instituted creative practices that support informed choice and leverage quality employment outcomes. These range from creating financial incentives to peer mentoring of case managers, vocational rehabilitation counselors and other gatekeepers, strategies for guiding career aspiration, and building capacity so that real choice can be offered in all the communities where people live. Equally, some states have been more aggressive in eliminating segregated day service options (See Appendix A: Examples of Good Practices Supporting Informed Choice from the States).
Conclusion
As we have described throughout this Policy Brief, we are in a time of rapid change. There is unprecedented alignment of law and policy and regulation that aim to create a mandate and affirmative obligations for state and federal systems to support people with disabilities to have the same choices and opportunities as people without disabilities. A window of opportunity has opened to exploit these changes and for the vision of full participation and inclusion in community life to be realized for people with disabilities. But that window could close. Or we could have what Burton Blatt once called a “reform to sameness” (Blatt, 1970).
We need to have appropriately high expectations for people with disabilities. Also, a respect for the exercise of what famed author and advocate Bob Perske called “the dignity of risk” (Perske, 1972). This includes opportunities for people with disabilities to exercise the right to make informed choices – big and small in life – from big things like working and contributing in life and who to live with, to the smallest things that can often make all the difference in a person’s life.
Conflict of interest
The authors have no conflict of interest to report.
Footnotes
APPENDIX A:
APPENDIX B:
APPENDIX C:
Informed choice is part of “supported decision making” as an alternative to guardianship. The Statement of Principles by the Coalition on Alternatives to Guardianship says, “Every person can make choices and has a right to make decisions. People who have a cognitive or intellectual disability may express those choices/decisions in non-traditional ways. Any legal system or proceeding which deprives an individual of her/his right to be accommodated and supported in choosing and making decisions and which appoints a substitute decision maker based on tests of competence, makes that person vulnerable and deprives him/her not only of his/her right to self-determination but also of other rights which should be inalienable.” Informed choice is used here because it is codified in current law, policy and regulations. It is included in each of the current landmark cases interpreting the ADA (for additional information on the ADA, see www.ada.gov). Informed choice as part of supported decision making, includes a duty for affirmative efforts on the part of government (for additional information on Supported Decision Making, see 
).”
Supported decision-making is “A process of supporting and accommodating an adult with a disability to enable the adult to make life decisions, including decisions related to where the adult wants to live, the services, supports, and medical care the adult wants to receive, whom the adult wants to live with, and where the adult wants to work, without impeding the self-determination of the adult (Texas Legislature, 2015).
These questions are: What frame of reference is being used? How do we assist people in obtaining access to a better frame of reference when making choices? What is life like for other people of the same age, interests and goals? How do the prospective choices enable that life? Is the suggested choice likely to invite, risk or perpetuate neglect or other harm? Who is the most vulnerable in the situation? Who is at risk if particular choices are made? Who will be left out? Who is the chooser? Why is this the chooser in this situation? What voice does the subject of the choice have? Why does he or she not have a greater or determinative choice?
Statement of the Department of Justice on Enforcement of the Integration Mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C. Retrieved from http://www.ada.gov/olmstead/q&a_olmstead.htm
Lane et al. v. Brown et al. Settlement Agreement at 8.
Statement of the Department of Justice on Enforcement of the Integration Mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C. Accessed March 20, 2015 http://www.ada.gov/olmstead/q&a_olmstead.htm
United States v. Virginia Settlement Agreement at 14.
Id. at 16.
Acknowledgments
The authors wish to acknowledge the work of many individuals who provided assistance in writing this Policy Brief. They include: Nanette Goodman, Serena Lowe, Christopher Button, Steven Schwartz, Esq., David Ferleger, Esq., Deputy Assistant Secretary, Sue Swenson, Jennifer Mathis, Esq., Alison Barkoff, Esq., Gina Kline, Esq., Anne Kuhns, Esq., Ilias Savakis, Dr. Lisa Mills, Dr. Ruthie-Marie Beckwith, Dr. David Mank and Dr. James Conroy.