Surviving the Inclusion Delusion: Danny at 40

I have made some changes and corrections to this blog post since it was posted on October 3rd, 2016. This version may look slightly different from the original, but the substance of the post has not changed.---JRB

Update: This post was published in the Nonprofit Quarterly on 10/26/16

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My son Danny is forty years old this week. He has multiple disabilities resulting from brain damage acquired during his first few days after birth. He functions at the level of a 6 to 12 month old infant and always will. And, yes, I know he is not really an infant.  We do not love him less because he lives and survives with profound developmental disabilities. 

I’ll spare you the details of his birth and the aftermath. It’s enough to say that while the other mothers whose babies were being discharged from the hospital were learning how to give their babies a bath, I was receiving instructions on how to administer Cardiopulmonary Resuscitation to an infant.  

I first heard the term Inclusion around 1990. Danny was 13 years old and attending High Point School in Ann Arbor. High Point was an outstanding program for Danny, bringing together services, expertise, and a supportive community to accommodate children with the most severe disabilities, including complex medical and behavioral conditions.  

Inclusion, when applied to schooling for disabled children, is the belief that all children, regardless of the severity or nature of their disabilities, can and should be educated in regular classrooms with their non-disabled peers.  Inclusion was promoted by many disability advocates as a “right” for every child. Most discussions of the idea did not include an examination of whether the premise on which the belief is based is true for every child or whether it is required by the federal Individuals with Disabilities Education Act (it is not). In the face of any disagreement with the idea, promoters of inclusion encouraged families to take sides: “Are you for ‘Inclusion’ or against it?” Or as many advocates would have it, “Do you want disabled children isolated and segregated from the rest of society or do you want them to be fully integrated into and embraced by ‘the community’”? This continues to this day. See "Choosing Sides On School Inclusion" from the Huffington Post, 8/22/16.

The Inclusion Delusion began with a false and unprovable assertion based on wishful thinking and a willful misinterpretation of federal law. In 1990, there were many disabled children who were unjustly and illegally prevented from participating in classrooms with their non-disabled peers and there still are.  Many of their parents understandably leapt at the idea that by proclaiming a belief in Inclusion, their children’s needs might finally be recognized and fulfilled. 

But the uncritical acceptance of the Inclusion Delusion disregarded a number of moral and ethical questions:  Is it right to make judgments about “all children with disabilities” without considering their individuality and acknowledging the full range of their diverse needs?  Do advocacy organizations or government agencies have a right to impose on children and their parents an all-encompassing doctrine when the parents and others who know the child best have good reason to disagree? Is Inclusion the ultimate goal of educating children with disabilities or are the needs of the individual child paramount in determining educational services and placement? Is Inclusion a cause that must be served, whether or not it is appropriate for a specific child? 

In the early 1990’s, the indoctrination for inclusion in schools was intense, an obvious sign that the project was well-funded and a great opportunity for organizations and local agencies to tap into a new funding stream. I attended a meeting sponsored by our local ARC (formerly the Association for Retarded Citizens) featuring a speaker from another state. She gave a rousing speech citing success stories of even the most profoundly disabled children blossoming in the presence of their non-disabled peers. Non-disabled children, she said, were learning acceptance, tolerance, and the value of people with disabilities to society and their fellow citizens. 

As I listened, I pondered how Danny would be accommodated in a regular middle school classroom? How would they deal with his bouts of vomiting after meals, the necessity for frequent diaper changes, and his need for floor space for his favorite activity - rolling over? Would other students and staff tolerate his occasional blood-curdling screams when things weren't going well for him? Was it wise to remove him from an environment that had every accommodation that he needed and place him where virtually nothing was geared toward his needs? Could anything prevent him from becoming the chief source of disruption for almost every activity that normally occurs in a typical classroom?

I started to pay more attention to the speaker when she offered up some good advice: 

“Give people with disabilities what they need and want! If you want to know what they need and want, ASK THEM! “

Now, that made sense to me and I became more optimistic that I would get something out of the evening beyond a welcome break from caregiving. My optimism was soon crushed, however. The speaker followed her initial advice with a list, her list, of all the things people with disabilities are supposed to need and want. She did not ask if the audience agreed with her.  “They all want to be treated like everybody else,” she said, apparently oblivious to the fact that Danny would die if he were “treated like everybody else”. She went on: “…they want to live independently and make their own decisions; they want to go to regular schools and work at regular jobs; they want to be included in their communities in every aspect of life,”  and so on. Some of the items on her list made sense to me, but most did not considering the complexity of Danny’s severe disabilities.

On another occasion, I saw a film of children's responses to having disabled students in their classrooms. One boy said he had learned that, "Disabled people can do everything that everyone else can do. They just have to try harder." I can understand a child coming to such a simplistic view of disability, but for the adults to include it in a film promoting Inclusion raises questions about their judgment. Poor Danny, I thought. With that kind of "learning", what would ignorance look like?

Danny continued at High Point school for another 13 years. As the Inclusion movement took hold, many children were moved out to local schools, some with the approval and support of their parents and some without. There were threats that the school would close and it almost did. Finally, a charter school and other programs sponsored by the County school district moved in to the empty classrooms and eventually filled the space left by special ed students who had moved out. The integration of High Point and the charter school proceeded at a relaxed pace and was not forced where it was not appropriate for the students involved. At the same time the integrity and the usefulness of the High Point program continued to function to the benefit of the most severely disabled children in Washtenaw County. 

Was this an example of the success of Inclusive education? I don’t believe so and it certainly did not meet the criteria set by advocacy organizations that demanded that disabled children be seen to hobnob with their non-disabled peers to prove to the world they were just like everybody else. The purpose of High Point was never to isolate and segregate its students from the broader community, but to give them an environment and specialized care that was not likely to be achieved anywhere else. 

The Inclusion Movement in education was an ideological undertaking, more enshrined in the imagination of zealots than in the laws and policies governing the education of actual children with disabilities. The 1975 Education for All Handicapped Children Act was in full swing by the late 1970’s and early 1980's, with the majority of children in special education, those with learning disabilities and speech and language problems, attending their neighborhood schools and spending most of their time with children who were not disabled. It was true that schools still ignored the needs of children who caused them inconvenience or were difficult to accommodate or educate, but parents were getting the idea that with a lot of hard work and belief in themselves and what they knew about their children, it was possible to make headway with the new protections and rights afforded their children. 

The Inclusion Delusion, that all children could be accommodated in regular classrooms, signaled a dramatic shift in thinking. Rather than determining the education that each child received based on his or her unique needs, it made the assumption that every child could succeed in placement in regular classrooms. If that did not work, the parents, the schools, and the professionals must have done something wrong. Or, as one parent said in another short documentary promoting Inclusion, “Even if it doesn’t work, you should do it anyway. It’s the right thing to do”.

For years, the proponents of Inclusion in schools have pitted parents against parents, demonized teachers and staff who work with children in specialized classrooms and special schools and set the stage for years to come for disability movements based on over broad generalizations about people with disabilities. 

In the mad dash to close institutions and many other specialized programs for people with disabilities, the people directly affected by these closures were rarely asked their opinion early enough in the process to make a difference.  Instead, advocacy groups, especially those that receive federal funding to promote their causes, claimed to represent people with disabilities and swooped in with all the answers: No one would choose to live in an institution or group home, work at a sheltered workshop, attend a day program with other people with disabilities, or live anywhere but in their own home or at home with their family. All people with disabilities can and should live independently, make all their own decisions, and work in integrated, competitive work settings. 

The truth is that there are people with disabilities who can do only some of these things, some who can do none of them, and some who choose to do things differently than other people with similar disabilities. They have been marginalized. The closure of programs and services that meet their needs has been justified with the promise that closing programs that no one wants, according to the advocates, will pay for more services to more people, “in the community”. This is unlikely to ever be realized as states see “savings” as opportunities to fund more popular government- supported programs (such as fixing potholes), to reduce taxes, and to continue to ignore many of the needs of people with disabilities. Attempts to develop innovative family-initiated projects to serve and house people with disabilities that may actually save money in the long run are also being thwarted by advocates who fear any incursions into the territory they have claimed for themselves as the representatives of all people with disabilities.

Thanks to Danny (and Ian who came along eight years later), my blog has been an attempt to set the record straight, give a voice to people who are rarely heard, and attempt to restore some balance in the stories that are told about people with disabilities. This is an unbelievably  frustrating time for families who see their judgement questioned at every turn as they attempt to salvage necessary services for their loved ones and hope for a truly inclusive future that acknowledges differences in abilities and needs and honors the choices that families and their loved-ones must make. 

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For information on Michigan special education and other kids issues, check out Bridges4Kids.

Funding and the availability of support services for I/DD are not keeping up with the demand

4,902,835 with Intellectual and Developmental Disabilities (I/DD) in USA

1,389,611 supported in an out-of-home residential setting

852,923 individuals living with a caregiver 60 years or older

244,195 residential placements funded from 1994 - 2011

Excerpts from the Madison House Autism Foundation (MHAF), "5 Things You Need to Know about Disability Housing and Advocacy" by Desiree Kameka:

Funding for support services for adults with autism and other I/DD is not keeping up with the demand

States are hoping that families will continue to support their loved ones with disabilities until they no longer can, but delaying assistance until a crisis or death occurs should not be the only option. Parents are often forced to leave the workforce, and adults with I/DD are not given opportunities to grow by leaving the nest. In the best situations, adults with I/DD are content at home but become increasingly dependent on an aging family caregiver; in the worst situations, they are stuck in an abusive and isolated home as states assume that living with one’s family is the best option for everyone. States may even offer financial support to keep an adult with I/DD in his family home. It is essential that people have access to public funding for the supports and services they require to live in a setting outside of the family home. The graphic [above] shows the enormous need for housing alongside the actual growth of residential support.

Check out your State Profile from the State of the States in Developmental Disabilities, a study that has tracked data for more than 35 years. To find residential trends in your state click here.

...

Government officials do not hear from everyday families nor recipients of publicly funded supports services with I/DD, and this impacts future housing and support choices

Who is talking to CMS or other policymakers as they develop regulations? The most prominent voices today are paid, professional advocates in the DC-metro area. These paid advocates schedule meetings, create statements, attend government events and hearings, and sit on various task forces made up of others in the same circles. While their policy recommendations may make sense from an ideological standpoint, these ideas are often unrealistic in implementation and lacks generalizability when considering the diverse needs and preferences of individuals who utilize waivers. For example, CMS regulations on HCBS waivers requires waiver recipients to come and go from their house at any time. This is an important right for many people, but implementation of this regulation without additional funding for the wide array of waiver recipients makes the regulation simply words on paper.

Let me illustrate: For an autistic adult who can not identify the difference between his front yard and the street, leaving the house without support staff is unsafe and may put that person at risk of being hit by a car. Reimbursement of support staff may allow for only one staff person to support three individuals living in the house. Following CMS regulations, if the staff member is required to accompany one of the housemates on a walk, the two remaining housemates would be left unsupervised at home. If these housemates lived in a pedestrian-oriented gated-community, they could all walk freely in their neighborhood as cars are intentionally restricted. Unfortunately, a neighborhood of this design would be considered isolating by CMS’s standard.

See also the Coalition for Community Choice

Read the full article here

Michigan : DHHS wants to hear from you about the services you need and want

This is a flyer from the Michigan Department of Health and Human Services:

TELL US WHAT YOU WANT!

The Michigan Department of Health and Human Services (MDHHS) is asking people with mental illness, emotional disorder, developmental or intellectual disability, or substance use disorder, and their family members, what supports and services they need/want!

This is a follow-up to the Lieutenant Governor’s workgroup on the 298 boilerplate that was in the Governor’s budget recommending privatizing behavioral health services. The boilerplate was changed, but MDHHS needs to write a report to Legislators about suggestions for improving the service system.

To collect information a survey was developed. MDHHS is hosting group meetings to ask people the survey questions. Meetings are scheduled for:

October 4, 2016
From 1-4 pm

October 5, 2016
From 6-9 pm

at 

The Hannah Center
819 Abbot Road
East Lansing, Michigan 48823
(517) 333-2580

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For those wanting to comment on a proposal but unable to attend the meeting can access a questionnaire… and then send (email or USPO) the completed questionnaire to:   MDHHS-298@michigan.gov

To obtain the Word version of the survey go to the Affinity Group webpage and scroll down to "Questions for eligible populations and families". You can then fill in the survey answers using the Word document and return it by email or regular mail.

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Background information: 

The 298 Initiative

[Section 298 was the notorious proposal inserted into the Governor's 2016 budget bill in March 2016. It had language in it that would have handed over Medicaid funding for behavioral health, including Community Mental Health funding for DD, to Medicaid Health Plans. This change to privatize the funding of services was placed in the budget bill without hearings or input from people affected by the proposal. It was withdrawn and the 298 Initiative was created to make recommendations to the Michigan legislature regarding funding and services for people with DD and other disabilities.]

"The Section 298 Initiative is a statewide effort to improve the coordination of physical health services and behavioral health services in Michigan. This initiative is based upon Section 298 in the Public Act 268 of 2016. Under Section 298, the Michigan Legislature directs the Michigan Department of Health and Human Services to develop a set of recommendations “regarding the most effective financing model and policies for behavioral health services in order to improve the coordination of behavioral and physical health services for individuals with mental illnesses, intellectual and developmental disabilities, and substance use disorders...”

Follow the links on the 298 Website for more information.

Montana non-profit service providers echo funding problems found in other states.

In an opinion piece from 9/26/16, from a Montana news site Missoulian.com, Jesse Dunn and five other co-signers from non-profit organizations, make a case for the difficulties of providing quality services to people with developmental disabilities when funding has not kept pace with requirements for maintaining and improving care:

Funding needed to responsibly care for individuals with developmental disabilities

“The Montana Department of Public Health and Human Services administers a variety of programs funded by state and federal appropriations to pay for the services provided by the nonprofit direct care providers. Sadly, the funding levels for disability services have lagged over the past decade and failed to meet the rising costs of providing essential services to this special population. Consequently, hiring and retaining qualified, experienced direct care providers has become a near crisis situation. Vacancies, high turnover rates and inadequately experienced care givers plague human service nonprofits, obstructing the mission to enhance our clients’ quality of life. Nonprofits need an adequate number of qualified staff to responsibly care for eligible individuals. Further, the laws regulating support services for people with disabilities mandate staff-to-client ratios to ensure safe and effective client care.

"However, those staffing challenges are getting worse as inflation, mandated government regulations and rising standards of care all keep driving up the cost of providing services. Those of us who belong to the Montana Association of Community Disability Services wish to highlight this issue on behalf of those with developmental and intellectual disabilities whom we serve. For us, it is unconscionable to watch our nonprofit agencies slip further behind and sacrifice quality care for those who are severely disabled. We believe we must educate the public and lawmakers to the plight of these nonprofit agencies that represent an otherwise voiceless community for whom we advocate.

"It is our wish that those who care about the quality of life and safety of individuals who experience disabilities will join us in calling for a review of the current funding mechanisms…

"The funding deficit is not limited to direct care staff but also, with such complex billing and reporting obligations that go along with state and federal programs, there is a crucial need for sophisticated financial management and internal controls. The level of expertise and experience needed to track, control, report and manage the range of different government-financed programs that fund the services nonprofits provide is expensive. Thus, we need adequate funding for both direct care services and for the required financial management and accountability that nonprofits seek.

"…Please join us in getting this message out on behalf of those who do not have a voice in the public policy process."

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Well-said, Montana service providers!

Read the full article here...

Strategic Planning for the Detroit Wayne Mental Health Authority

A meeting of the Detroit Wayne Mental Health Authority (DWMHA) strategic planning committee was held on Wednesday, 9/21/16 in Detroit. Ed Diegel, a parent and advocate for people with developmental disabilities, commented on the proposed structure of the MCPN (Managers of Comprehensive Provider Networks - regional providers of services within Wayne County).

I think Ed’s comments are representative of what most families want: choice, reasonable control of costs, accountability, and individualized care without the overlay of an ideology that tends to dictate choices and limit the availability of appropriate services.

These comments were forwarded to the strategic planning committee by email: Strategicplan@dwmha.com . I assume that the committee will accept written comments from other residents of Wayne County affected by strategic planning. 

Comments from Ed Diegel:

The current MCPN configuration offers advantages which should be maintained regardless of the final plan design.

• The current model offers choice; choice between MCPN’s, case workers and providers. Each consumer can seek out the highest quality MCPN, case worker and provider combination for meeting individual needs
• Competition: MCPN’s and providers are driven to perform better by responding to the competitive marketplace.
• Personal touch – the CLS (Community Living Supports) case workers visit with clients in work and residential settings to see the dynamics of client life first hand.

There have been several disadvantages to the current model which need to be addressed in the plan:

• Redundant costs—each MCPN develops its own policies, documentation procedures and payment routines. These costs could be eliminated at the MCPN level if the tasks were performed by the MCPN. Furthermore, savings would be realized at the provider level from having to deal with only one set of requirements.
• Funding inequities—there can be significant (greater than 50%) payment rate variances between MCPN’s for the same service. In addition, an MCPN has given favorable payment rates for the same service when comparing ‘partners’ to non-partners.
• Accountability – MCPN’s have passed rate decreases to providers in years when there has been no funding decrease from the state. In addition, when the Authority recommended terminating the contract of an MCPN, the Authority Board overrode the decision, sending a weak accountability message through the system.
• Ideology - one MCPN refuses to fund clients in larger homes even when the client expresses a desire to live in these residences and the residences have a long and proud history of quality and are located in the heart of local communities from which they draw support and the opportunity for inclusion not available to many persons living in small homes and apartments. This stance does not reconcile with the basic Person Centered Plan philosophy. This same bias applies against individuals who choose to work in so called congregate work settings.

Metro Detroit Town Hall meetings on Mental Health Funding and Services

From the the Detroit Free Press, 9/22/16:

“A series of town hall meetings about mental health funding and services in Michigan is kicking off Thursday, with the first of three meetings in metro Detroit to be held in Oakland County.

"Each event is to have a panel of state legislators from their respective counties to hear from advocates, community mental health leaders and citizens concerned about mental health reform. Other town halls are scheduled for venues in Macomb and Wayne counties.

"Specifically, organizers hope to have people express their concerns about properly funding more and better mental health services to their policymakers and to oppose efforts in Lansing to shift Medicaid funding for mental health services to private HMOs."

Earlier this year the Governor proposed in his budget bill to drastically change the way Mental Health services are funded and delivered in Michigan. The proposal would have allowed for the privatizing of Medicaid spending on Mental Health, handing funding over to private Medicaid Health Plans.  This created an uproar that was enough to have the Governor withdraw his proposals for this year, but it could come up again in January, after the Michigan Department of Health and Human Services delivers a report on reform proposals to the legislature.

The first town hall is tonight (Thursday, 9/22/16) at 7 p.m. in the Beaumont Hospital Administration Auditorium, 3601 Thirteen Mile in Royal Oak. Two more Town Halls are set for or 7 p.m. Sept. 28 at the Macomb Intermediate School District, 44001 Garfield in Clinton Township and 10 a.m. Oct. 15 at UAW Region 1A, 9650 Telegraph Road in Taylor.

Comments are limited to five minutes. These events are sponsored by organizations listed on the flyer. Send written comments to freda.cummins@gmail.com . Call 248-203-1998 for more information.

See the Flyer for these events

Guardianship, SDM, and the need for better information

End of Summer

Guardianship is the legal process whereby a state court appoints a person or organization to have the care and custody of an incapacitated person who is unable to make some or all personal and/or financial decisions. 

In recent years, the federal government has funded and promoted initiatives, the most prominent being Supported Decision-Making or SDM,  to replace and limit guardianship for people with disabilities. For the most part, these initiatives are based on assertions by federal agencies and disability rights advocates that all people with disabilities are capable of making their own decisions with the appropriate supports.  These advocates assert that guardianship with the protection of the courts is neither necessary nor desirable regardless of the severity or nature of an individual’s cognitive or behavioral disabilities, except in the most extreme cases (such as when a person is in a vegetative state). 

The belief that all people are capable of making their own decisions is belied by the experiences of family members of people with severe and complex disabilities, many of whom are guardians. They are acutely aware of the degree to which their disabled family member would be harmed if he or she did not have the protection of a person who is legally authorized to act on the disabled individual’s behalf. Families generally are also aware of what happens to people who are left vulnerable and exposed to exploitation, abuse, and neglect when they do not have a family member or close friend with the authority to intervene when problems with their care and services arise.   

Judging from reports and studies about guardianship, the headlong plunge by federal agencies to fund initiatives to replace and restrict guardianship is being done in the absence of complete and reliable information. Answers to basic questions about guardianship are hard to find: How many people are under guardianship? Who are the guardians, and who are their “wards” (the individuals for whom they serve as guardians)? What are the problems or abuses in state guardianship systems that need to be corrected? How well do states enforce protections in law that prevent guardianship from being unnecessarily imposed on individuals with disabilities? What happens to people who do not have guardians who need them? There is plenty of anecdotal evidence of guardianship abuse or harm, but there is no way to generalize from this information about solutions to reform guardianship so that these instances can be overcome or avoided. For the most part, basic questions cannot be answered in any detailed or comprehensive way because states simply do not collect sufficient data to draw conclusions about the effect of guardianship on individuals with disabilities.

There have been many attempts to fill the gaps in knowledge about guardianship and its effects on people with disabilities. A report published on December 24, 2014, entitled "SSA Representative Payee: Survey of State Guardianship Laws and Court Practices", by the Administrative Conference of the United States (ACUS) is the result of a request from the federal Social Security Administration (SSA). The SSA asked the ACUS “to study current state guardianship laws and state court practices. ACUS was charged with (1) carrying out legal research on state laws nationwide governing guardian selection, monitoring, and sanctions; (2) conducting a survey that captures information on state court practices and procedures relating to guardianships, and analyzing the results of the survey; and (3) conducting interviews with up to nine state organizations or governmental entities with expertise in, or that provides services related to, adult protective services or foster care in order to evaluate their respective practices related to guardianship and benefits monitoring…” (p. 1) [all references to page numbers are from the Final Report of the "SSA Representative Payee: Survey of State Guardianship Laws and Court Practices"]

The study was instigated in part by the need for more information and coordination between the federal Social Security Administration (SSA) and the states. For instance, the SSA appoints Representative Payees to handle federal benefits for beneficiaries who are not able to do this on their own. Often the person appointed is a guardian appointed under state law. One example of how It would be helpful to the SSA to access information on current and potential guardians is for the SSA to determine whether a person being considered as a Representative Payee has been found to have defrauded or abused the ward or has otherwise been found to be untrustworthy. 

Any study as complex as the SSA survey is going to have limitations and this one has plenty. [see p. 9]. To obtain a “representative sample” that accurately reflects the members of an entire population affected by guardianship or of court system employees with knowledge of local guardianship procedures who were surveyed for this report,  would have been too costly and time consuming and perhaps not even possible with the current state of data collection on guardianship and court practices. This survey was done using a “non-probability” or “convenience” sample, and therefore the “findings from this study are not necessarily representative of the practices of all state courts.”  [emphasis added] Despite these limitations,  “…the rich quantitative and qualitative set of data is informative of the issues studied …The strategy behind this project was to cast a broad net and seek a large respondent pool to collect a dataset that would provide a rich description of the issues. The strategy was effective…” [p. 65] 

One limitation of the study that was not discussed in the report is that no distinctions were made between guardianships and conservatorships for individuals with intellectual and developmental disabilities (IDD) and the greater population of people with disabilities related to aging, mental illness, and physical disabilities. 

There is a large quantity of information in this report and, depending on one’s perspective, some parts of it will be more relevant than others. The Table of Contents [pp. i - ii] give an overview of what the report includes. I was looking for answers to the basic questions about guardianship and here is what I found:

Start with the Definitions:  

There are clear and concise definitions for the terms used throughout the report [p. 7]

• Guardian: an individual or organization appointed by a court to exercise some or all powers over the person and/or the estate of an adult determined by a court to lack capacity to make decisions on a temporary or permanent basis. When the term "guardian" or "guardianship" is used in survey questions, it should be read broadly to cover both guardians of the person and of the estate.
• Guardian of the Person: a guardian who possesses some or all powers with regard to the personal affairs of an adult. 
• Guardian of the Estate: a guardian who possesses some or all powers with regard to the finances or property of an adult. (In many states, this type of guardian is referred to as a "conservator.")
•  Incapacitated Person: an adult who has been determined by a court to lack capacity to make some or all personal and/or financial decisions and for whom a guardian has been appointed. (Some states may refer to such individuals as "persons under guardianship," "conservatees," or "wards.") 

Here are more definitions from footnotes (p. 4): 

• Public guardians are appointed by the court, and are employed to act as guardians when no private person or agency is available or able to act in a guardianship capacity. Examples include public guardian offices or social service agencies.  
• Professional guardians are guardians who are not related to the incapacitated person, and who may receive payment for their guardianship services.  
• A non-professional guardian is a guardian who is not certified or licensed as a professional, such as a family member or friend of the incapacitated person.  

Who are the guardians?

About 75 percent of all guardians are friends, family, or acquaintances of the incapacitated person. [p.3] 

This is broken down further in Exhibit 4 on [p.16], showing that for guardians appointed for “guardianship of the person”, 74% are family or friends, 9% are professional guardians, 12% are public guardians, 8% are volunteers, and 14% are “other”.

For “guardianship of the estate”, 73% are family or friends, 12% are professional guardians, 12% are public guardians, 3% are volunteers, and 18% are “other”.

Available background and other information on guardians:

“Criminal Background Checks: Almost four of ten survey respondents indicated that criminal background reports are not required of prospective non-professional guardians of the estate.” [p.4]

"Credit/Financial Reports: The vast majority of court respondents (60 percent) do not review credit or financial reports on prospective guardians of the estate." [p. 4]

"SSA Representative Payee Status: Almost half of court respondents (47 percent) indicated that the court inquires about the prospective guardian’s representative payee status in relation to the incapacitated person in most or all cases." [p.4] [This information, if known by local agencies, can be helpful in determining whether individuals are receiving federal benefits]

"Public Access to Files: Over 60 percent of court respondents (62 percent) stated that all or most guardianship case files are available to the public—either electronically or in paper form." [p.5]

Misconduct and Sanctions: "Two-thirds of court respondents (64 percent) indicated that the court had taken actions against at least one guardian for misconduct, malfeasance, or serious failure to fulfill their obligations in the past three years. In these cases, the most serious sanctions applied were the removal and appointment of a successor guardian and issuing a show cause or contempt citation..."[p. 5] 

"Record-Keeping: Two-thirds of court respondents who had reported a misconduct-related case indicated that records related to the removal of the guardian were kept in individual case files; 18 percent of respondents stated that no records were kept." [p. 5]

"Coordination Needs: Respondents who indicated enhanced coordination with SSA would be beneficial described four areas in which there is a need for greater information sharing: case information; coordination and communication; monitoring; and SSA rules and administration." [p.6] 

"Dual Guardian-Representative Payee Status: Almost two-thirds of court respondents (64 percent) did not know what percentage of Guardians of the Estate also serve as representative payee for Social Security benefits." [p.5]

Estimate of Trends in Adult Guardianship Filings Over the Last 3 Years:

"The majority of court respondents (427 or 57 percent) indicated that filings have stayed about the same. A sizeable minority—281 persons or 38 percent of those who could provide a response—indicated that filings have increased. Only 41 persons (5 percent) felt that filings have decreased." [p. 36]

67% of court systems use an electronic case management system or database. [p.29]

"Courts that use electronic case management systems in guardianship cases generally have the following capabilities: recording filing and disposition of guardianship cases; capturing additional case-level data elements (such as type of guardianship, name or age of incapacitated person, nature of incapacity); generating reminders of upcoming due dates; and tracking filing status of financial accountings. Of those with case management systems, only 31 respondents indicated systems in use that have the capacity to flag anomalies, errors, or potential 'red flags' in financial accountings. Those who noted 'Other' most commonly stated that the system was not yet in operation."  [p. 30] 

Exhibit 22: Sanctions in Cases of Misconduct-Related Issues [p. 32] "In this survey, respondents were asked to select all types of sanctions used when addressing a case of misconduct, malfeasance, or serous failure to fulfill obligations. The most common sanction [for misconduct, malfeasance, or serious failure to fulfill obligations of guardians] is the removal of the guardian and appointment of a successor guardian—89 percent of court respondents had used this strategy..."

Exhibit 26: Percentage of Guardians of the Estate estimated to also serve as Representative Payee for SS Benefits [p. 37]  "Of those respondents who provided an estimate, 41 percent of estimates were in the 76 to 100 percent range. The majority of respondents who provided estimates (68 percent) indicated that dual guardianship/representative payee status applied to at least half of their caseload." 

Adult Protective Services Organizations [p. 54] were surveyed. They offered a different perspective on guardianship. Because these programs “tend to be fragmented, and investigations are often conducted by a different office or department from that which does guardian assignments or monitoring”, representatives from these agencies could only discuss the part of their job that touched on guardianship but were “relatively unfamiliar with guardian assignation, monitoring, and removal.”..."in general, interactions with the federal government are relatively rare for these organizations." [p. 57]

The most common case type in the [APS]organizations that ACUS interviewed is that of self-neglect. "In Texas, self-neglect cases are the most common cases, followed by abuse and exploitation by family members. …Self-neglect is also the most common type of case seen by the Florida APS. In fiscal year 2013/14, Florida APS investigated 47,000 cases. Over 16,000 of these cases were classified as cases of self-neglect. A further 14,000 were cases of inadequate supervision, followed by 9,000 cases of financial exploitation and 8,000 cases of physical injury." [p. 55] 

Trends over Time and Resource Constraints [p. 57] “Representatives from the Washington, Texas, and Maryland APS programs stressed the increased demands that are being placed on their systems. For instance, a Washington representative called the recent rise in cases “astronomical,” and added that this increased demand was due to greater numbers of elderly persons in need, better awareness of elder abuse, and an increased number of referrals." [emphasis added]

"Respondents and interviewees also noted that SSA officials’ strong preference to release information directly to the incapacitated individual often made it difficult for the guardian to obtain important information. Given the physical and mental limitations that incapacitated individuals often face, it can be difficult for them to obtain, or make use of, important information." [p.65] 

Database of Guardians and Incapacitated Persons: Currently, no nationwide database related to guardianship exists…[p. 66] 

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This survey report may seem like a grab bag of observations and perspectives on guardianship that sometimes only obliquely shed light on guardianship issues. It is, however, an important contribution to accumulating knowledge on the issues and showing how little we really know. 

See more at Understanding Guardianship and SDM