![]() Alternatives to Guardianship Project What's New |
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May 1, 2023 Medical Associations Receive Report on Patient Decision Making Options ![]() April 19, 2023 Networking with Public Administrators ![]() April 13, 2023 Exploring the Role of Psychologists and Social Workers in Guardianship Evaluations ![]() April 12, 2023 Reaching Out to Nursing, Medical and Hospital Associations ![]() April 10, 2023 Adding Health Care Proxies to Medical Toolkit ![]() April 8, 2023 Outreach to Missouri Law Schools ![]() April 6, 2023 Missouri Supreme Court Urged to Seek Federal Grant ![]() March 30, 2023 U.S. Senate Committee Holds Hearing on Guardianship Alternatives ![]() The Select Committee on Aging of the United States Senate held a hearing today, taking testimony from experts and victims of guardianship abuse on how the federal government can prod the states to use les restrictive alternatives to guardianship, such as supported decision-making. Witnesses stressed that guardianship should be a last resort, not a first choice or default position for adults with mental or developmental disabilities. Spectrum Institute submitted recommendations to the committee in advance of the hearing. To view a video of the proceedings, click here. Those who would like to share stories about guardianships or offer recommendations for reform may have their remarks placed in the record of the hearing if the committee receives them by April 7. Send comments to: guardianships@aging.senate.gov As a follow up to the hearing, Sen. Casey introduced a bill to create a national advisory council to promote alternatives to guardianship and to collect data from the states on existing guardianships. In addition, it would provide funding for state to have a protection and advocacy agency focused on the rights of people being considered for and living under a guardianship. This network of state agencies would be built upon the existing network of protection and advocacy agencies authorized by the Developmental Disabilities Act of 2000. For more information on S1148, click here. March 4, 2023 Marriage Rights: Legal Authorities and Current Practices ![]() This report explains the legal basis for the freedom to marry for adults with developmental disabilities. It also makes recommendations on how the State of Missouri can assist such adults in making that right become a reality. Although this report focuses primarily on Missouri, it contains information that would be relevant to any state. To read or download the report, click here. February 27, 2023 Sexual Rights: Legal Authorities ![]() February 20, 2023 Sexual Rights: Annotated Bibliography ![]() February 14, 2023 Social Rights: First of Three Reports ![]() A second report will focus on the sexual rights and responsibilities of adults with developmental disabilities. A third will concentrate on the right to marry. Once these legal reports are published, the Capacity to Love Project will survey and analyze how school districts are educating teenagers and young adults on these issues, what the Division on Developmental Disabilities has to say about them, and the extent to which participants in guardianship proceedings are being educated on these topics. The project will also survey what actions have been taken by developmental service agencies in other states, such as Massachusetts, to produce resource materials on topics related to disability and sexuality. February 9, 2023 Capacity to Love Project is Launched ![]() January 25, 2023 Supported Decision-Making: Options for Missouri ![]() With assistance from Spectrum Institute and funding from the Missouri Developmental Disabilities Council, the Alternatives to Guardianship Project has released a new report promoting the use of supported decision-making (SDM) as an alternative to adult guardianships in Missouri. The report provides a framework to stimulate conversations among stakeholders and strategic planning by advocates for new legislation in Missouri to make SDM and other less restrictive alternatives to guardianship for people with mental and developmental disabilities a viable and practical reality rather than a theoretical possibility. The report is being widely distributed throughout the state. The options it presents will become the basis for a series of zoom forums later this year to encourage feedback and suggestions. The report and the community evaluation process should be valuable to legislators as they consider introducing or supporting SDM legislation. For a copy of the report, click here. December 31, 2022 Year-End Update on Project Activities ![]() December 1, 2022 ADA Educational Materials Sent to Missouri Courts ![]() November 18, 2022 DOJ Starts Investigation of Missouri's Guardianship System ![]() In response to the request for information, Spectrum Institute sent a written communication to the Civil Rights Division offering to share the results of its own multi-year investigation showing a pattern and practice of ADA violations in Missouri's guardianship proceedings. Thomas F Coleman is the legal director of Spectrum Institute and has been acting as a consultant to the Alternatives to Guardianship Project. He has been working on a major report for the project titled "How the ADA Applies to Guardianship Proceedings: A Primer for Missouri’s Judges, Attorneys, and Guardians." The report and an annotated bibliography on the subject will be sent to the Supreme Court and circuit courts throughout Missouri in January 2023. Update: (1-29-23) Spectrum Institute filed an ADA complaint with the DOJ on January 12, 2023 alleging that the adult guardianship system is operating in violation of federal law on a wide range of issues. The DOJ acknowledged receiving the complaint. On January 26, Viviana Bonilla-Lopez, a trial attorney with the Special Litigation Section of the DOJ, interviewed Thomas F. Coleman, legal director of Spectrum Institute, to learn additional details about the ADA complaint. Prior to her employment with the DOJ, Ms. Bonilla-Lopez (photo) acquired experience in promoting alternatives to guardianship, including supported decision-making, as a disability rights fellow with Equal Justice Works in Florida. She is heading up the investigation in Missouri described in the press release referenced above. November 13, 2022 Networking at The Arc National Conference ![]() November 3, 2022 Public Guardians Lack Adequate Funding and Staff ![]() Public administrators (PAs) throughout the state serve as guardians for 11,000 of the 30,500 adults in Missouri who are living under an order of guardianship. (p.2) One-third of their caseload consists of adults with intellectual or developmental disabilities. (p. 19) While national professional standards call for a ratio of one guardian per 20 protected adults, public administrators in Missouri, on average, have a ratio of one guardian to 90 adults. In terms of less restrictive alternatives, the report stated: "PAs often do not have the bandwidth for limited guardianship or supported decision-making, even when it is preferable. Guardianship is perceived by some system stakeholders as a loss or reduction of the ward’s independence and rights. However, without appropriate resources to spend additional time in decision-making with wards, PAs cannot easily afford partial rights to wards." (p. 15) We will be studying this report further, including the findings regarding inadequate funding, as we develop a comprehensive report focusing on all parts of the system and all participants, including the public administrators who are doing the best they can with limited resources to protect and assist vulnerable adults. November 2, 2022 The Perils of Judicial Control of Guardianship Legal Services: Time for a New Model in Missouri ![]() We hope the commentary will stimulate a conversation resulting in action to bring about the reforms necessary to ensure access to justice in guardianship proceedings for adults with mental and developmental disabilities. Legislative reforms adopted in 2018 were a good start, but only a start. Much more needs to be done to ensure that alternatives to guardianship are thoroughly explored by court-appointed attorneys and probate judges. And major changes need to be adopted and implemented to ensure that adults are not abandoned, for all practical purposes, by the courts and court-appointed attorneys the moment an order of guardianship is granted. The 30,000 adults living under an order of guardianship are not being given meaningful participation in these ongoing cases as required by the American with Disabilities Act. Court-appointed attorneys in Missouri are left to their own devices in terms of the scope and methods they use in representing clients in adult guardianship proceedings. In addition to the lack of specialized training (see posting for October 31, 2022), these attorneys are not given performance standards to guide them in zealously advocating for their clients and defending their rights. In sharp contrast to the improvisation that seems to be occurring in Missouri's guardianship courts, Massachusetts gives guardianship attorneys in that state specific performance standards to follow, with a checklist of minimum activities that should be performed in each case. The commentary calls attention to a model legal advocacy program that has been operating in Nevada for several years -- a program that should be considered for Missouri. To read the commentary, click here. November 1, 2022 Retention of Voting Rights Varies Widely by County ![]() State and federal laws come into play in these cases. The federal voting rights act prohibits states from depriving adults of the right to vote because they cannot read, write, or understand the nuances of voting. The federal Americans with Disabilities Act requires states to modify state laws and provide reasonable accommodations to assist disabled adults to vote. The ADA applies to adults with mental and developmental disabilities. We plan to expand our research into local practices to verify the practices of courts in other counties. It appears there is a need to educate judges and court-appointed attorneys about the mandates of federal laws and how they supersede state laws that discriminate on the basis of disability. State legislators should consider implementing voting rights reforms accomplished in California in 2016 after the federal Department of Justice opened an investigation into the widespread denial of voting rights of conservatees in that state. Now, under SB 589, the only criteria in California for denying a conservatee of the right to vote is a showing, by clear and convincing evidence, that the person cannot communicate, with or without reasonable accommodations, a desire to participate in the voting process. Prior to the passage of SB 589, nearly all conservatees lost the right to vote. Now, with a presumption of capacity to vote and the burden of proof so high to deny voting rights, most conservatees retain the right to vote. October 31, 2022 No Special Training Requirements for Guardianship Attorneys and Judges ![]() A recent email we received from the State Courts Administrator disclosed that there are no education or training requirements for guardianship judges and attorneys in Missouri. That was the case in California until 2019 when the Judicial Council adopted a court rule mandating training for court-appointed attorneys in probate conservatorship proceedings. These attorneys must receive continuing education on constitutional rights, the ADA, capacity assessments, and less restrictive alternatives in order to be qualified for appointments to these cases. The Texas Supreme Court issued an administrative order in 2017 requiring judges who presiding over guardianship cases to receive training in the following areas: the aging process and the nature of disabilities; requirements of the ADA and compliance methods; principles of equal access and accommodation; and the use of community resources for people with disabilities. Maryland's highest court has gone even further by issuing an order that defines the role of court-appointed counsel and establishes performance standards, in addition to mandating training related to these cases. Missouri can look to these and other states to develop training requirements for judges and attorneys who participate in guardianship cases. We will be developing proposals to submit to the Missouri State Bar and Supreme Court for continuing education requirements for guardianship attorneys and judges so that respondents with mental and developmental disabilities receive effective assistance of counsel and the administration of justice by properly trained judges. October 25, 2022 Jackson County Public Administrator is Interviewed ![]() October 15, 2022 Supreme Court Clerk and State Courts Administrator Respond to Records Requests Jennifer Hulme, director of the Alternatives to Guardianship Project, sent records requests on September 27, 2022 to the Clerk of the Supreme Court as well as to the State Court Administrator. In the requests, she explained:
"The Alternatives to Guardianship Project is in its early stages.
Foundational to our government-funded study is to gain knowledge of some
basic census data about open cases and new petitions. Adequacy of
funding and staffing, and planning judicial budgets for these cases,
depends on accurate data of this type.
"We are seeking to determine if the judicial branch in Missouri knows
how many people it is protecting in guardianships, if it has the data to
prepare and plan future budgets, and whether it has the data to
determine trends. The records we seek will help us answer those
questions.
"The issue of records on such matters is not unique to Missouri. I
am attaching a legal commentary
that was published three years ago in the Daily Journal legal newspaper
in California. The issues raised in that article would equally
apply to Missouri.
Update: (10-15-22) We received responses to our records requests from the Supreme Court and the State Court Administrator. The Court Clerk stated that the Court does not have the data we were seeking. The Administrator, however, provided data responsive to our request. According to the Administrator, there have been an average of about 3,000 new adult guardianship petitions filed each year for the past four years.
At the end of 2021, there were 30,537 active guardianship cases in the state, reflecting an increase of 2,121 active cases since 2018.
Update: (10-19-22) A new records request was submitted to the Office of State Courts Administrator asking for materials regarding the education and training of judges, court appointed attorneys, and guardians regarding their role in adult guardianship proceedings and their duties under the Americans with Disabilities Act. To read the request, click here. October 14, 2022 Supreme Court Responds to ADA Records Request ![]() Spectrum Institute sent an administrative records request to the Missouri Supreme Court on September 26, 2022. The request sought records on: (1) the Court's ADA policies; (2) any self-evaluation done by the Court on its ADA policies and practices; and (3) its grievance procedure to process complaints that its policies or practices do not comply with the requirements of federal law. Obtaining these records is a prerequisite to a proper evaluation of whether the courts in Missouri are meeting their obligations to ensure that litigants with mental or developmental disabilities are receiving access to justice in guardianship proceedings and meaningful participation in these liberty-encroaching cases. For a copy of the request, click here. Update (10-14-22) The Clerk of the Supreme Court responded to our request for ADA-related records through a letter that attached two documents: (1) policy on access to courts; and (2) Supreme Court's ADA grievance procedure. The letter also directed our attention to a webage addressing "disabled access" to court buildings. The letter concluded by stating that "this Court does not have any records pertaining to self-evaluations performed pursuant to 28 C.F.R. § 35.105 regarding adult guardianship proceedings or any other judicial proceedings." We independently found a webpage on the judicial branch website pertaining to general policies of the Missouri Courts regarding the ADA and disability nondiscrimination. That webpage states: "In accordance with the ADA, the Missouri judiciary will not discriminate against qualified individuals with disabilities in its services, programs or activities." It also provides a list of ADA coordinators for each court in the state to which individuals may direct requests for accommodations. We were unable to find anything on the judicial branch website regarding the obligations of courts, even without a request, to provide accommodations to litigants with known or obvious disabilities. The policies and practices of the judicial branch appear to be premised on the need for a request despite the fact that federal law states otherwise. October 5, 2022 Interview with Probate PJ in Jackson County ![]() September 8, 2022 Duties of Appointed Counsel: Policy vs. Practice
The article spells out in considerable detail the rights of such adults in guardianship proceedings. One of them is the right to have counsel who advocates for their wishes and protects their rights. One such right is to have appointed counsel seriously explore less restrictive alternatives and to argue for such, including demanding an evidentiary hearing or jury trial on the matter if necessary. What the article does not address, however, is the extent to which such attorneys are doing this in actual practice. Nor does it address how attorneys are impeded in providing such advocacy because they are often paid a flat fee of a few hundred dollars which, in effect, puts them in a bind and creates an actual or apparent conflict of interest. Put in three hours and earn about $150 per hour or put in more hours and perform the extra work for free.
The Alternatives to Guardianship Project will be investigating how many lawyers serve as appointed counsel in Missouri, how they are trained, if they have performance standards to meet, how much they are paid, and what system of monitoring exists to ensure that clients who generally cannot identify deficient performance (ad therefore cannot complaint about malpractice) receive the quality of representation that due process and the Americans with Disabilities Act would require. It will also examine the duties of the state and of counties to allocate sufficient funds to enable attorneys to provide effective assistance to indigent clients and steps that public entities can take to increase the level funding for guardianship legal defense and advocacy services. September 7, 2022 Supreme Court Asked about Status of ADA Complaint
Update: (9-24-22) We received a reply from the general counsel to the Supreme Court indicating that the Court did not take any action in response to the ADA complaint from Spectrum Institute, explaining that it wanted to see how a new law would be implemented. However, the letter indicates that the Court is open to receiving additional materials for consideration on the subject. We passed this information on to Spectrum Institute and have been informed that it will be providing the Court with additional materials on the application of the ADA to adults guardianship proceedings. September 6, 2022 Analysis of Missouri's Policies and Practices is Underway
August 31, 2022 Project to Review SDM Laws in California and Elsewhere
August 30, 2022
The Governor of New York signed into law a supported decision-making statute on statute on July 26, 2022. The law finds that adults with mental and developmental disabilities are often denied the right to make decisions based on stigmas and outdated beliefs about their capabilities. It recognizes that supported decision-making can be a less restrictive alternative to guardianship. It expresses a public policy to encourage the use of supported decision-making arrangements when they are feasible. An analysis of capacity shall take into account capacity with decision-making support or accommodations. The statute also defines supported decision-making, the role and duties of a support person, and the requirements for creating such an agreement. To read the new law, click here. The project will be analyzing the bill to determine if elements of it may be adapted for use in Missouri.
August 25, 2022 Project to Include a Mental Health Component
It is therefore important to educate adults with developmental
disabilities, their families, medical and mental health professionals,
service providers, attorneys, and judges about the adverse consequences
of failing to provide prompt and appropriate mental health services to
such adults as an essential component of enabling them to exercise their
right to self determination and to avoid or terminate otherwise
unnecessary guardianships.
Tina Baldwin is the director of the Mental Health Project of Spectrum
Institute. She oversaw the development of a
recent report on the consequences to adults with developmental
disabilities when necessary mental health services and therapy are
delayed or denied. Tina will serve as a consultant to the
Alternatives to Guardianship Project and Hulme Resources to educate
stakeholders in the guardianship system in Missouri about these
consequences and how to enhance mental health services for this
population in order to avoid them. The first steps will include an
assessment of the availability of mental health services for adults with
developmental disabilities in the state, whether they are in a
guardianship or not, and to solicit suggestions from stakeholders on how
to make such services more accessible and more responsive to the needs
of this population.
August 11, 2022 Outreach to Department of Mental Health ![]() August 10, 2022 Spanish Language SDM Presentation The following flyer was sent to Spanish speaking families of adults with developmental disabilities. ![]() August 9, 2022 Survey Being Distributed to Stakeholders ![]() Update: (12-9-22) Missouri P&A responded to our inquiry with a letter explaining its activities promoting alternatives to guardianship as a matter of policy, producing educational materials and forums, counseling clients, drafting supported decision-making agreements, and representing clients in guardianship proceedings. August 9, 2022 Records Request Sent to Supreme Court ![]() The website of the Supreme Court explains: "In addition to making legal decisions, the Supreme Court supervises all the lower state courts with the assistance of its state courts administrator's office, which oversees court programs, provides technical assistance, manages the Judiciary's budget, and conducts educational programs for judicial personnel. The Supreme Court also makes detailed practice and procedure rules that ensure uniform handling of Missouri court cases, including times for filing motions and admitting evidence. In addition, the Supreme Court licenses all attorneys practicing in Missouri, maintains the official roll of attorneys, and disciplines lawyers and judges for violating ethical rules of conduct." Update (8-19-22): The State Courts Administrator replied to our records request, stating that she is not the custodian of administrative records of the Supreme Court. We therefore sent an identical records request to the Supreme Court Clerk today. Update (9-1-22): The Clerk of the Supreme Court sent a letter stating that the Court was not in possession of or the custodian of any of the requested records. This implies that the Court has taken none of the actions mentioned in the records request. August 7, 2022 Review of SDM Progress in Texas ![]() Update: 9-15-22: A new report from Disability Rights Texas (DRTx), Overcoming Civil Death, exposes the broken system that imprisons many Texans with disabilities in unnecessary guardianships that limit their freedom and independence. Many people with disabilities have the capacity to have their rights restored, make their own decisions, and be a part of their community. And in many cases, the law is already in place to allow this to happen. But due to various obstacles, many people with disabilities remain in unnecessary guardianships and experience what is known as civil death. For a press release about the new report, click here. |
Hulme / Services Spectrum Institute Advisors Research Stakeholders |