Friday, September 30, 2016

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:


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


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


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:

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.


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.

Wednesday, September 28, 2016

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, 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:

“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."


Well-said, Montana service providers!

Read the full article here...

Thursday, September 22, 2016

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: . 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 . Call 248-203-1998 for more information.

See the Flyer for these events

Tuesday, September 20, 2016

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] 


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

Wednesday, September 14, 2016

VOR Position Paper on Guardianship and Supported Decision-Making

This document is by Hugo Dwyer, the Executive Director of VOR, and the VOR Issues/Oversight Committee. As a member of the VOR Issues/Oversight Committee, I participated in writing this position paper.   JRB

Guardianship is the legal process whereby a state court appoints a person or organization to have the care and custody of an adult or child who has been determined to be legally incapacitated. Parents are the assumed legal guardians of their minor children, but a guardian may be appointed for a child if the parents are not able to fulfill that role. An incapacitated adult is one 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.

Guardianships are awarded to protect the “ward”, the individual with a disability, from abuse, neglect, and exploitation. Guardians are expected to act in the best interests of the individual and to make decisions over medical, psychiatric, behavioral, and all other aspects of the person’s care that are authorized by the court based on the degree to which the individual is incapacitated. Legal guardianship is both a responsibility and a privilege.

As in every other aspect of providing protection, care, and services to people with IDD, the guardianship system is not problem-free: There are documented incidents of malfeasance, including over-burdened and mismanaged court systems; probate attorneys and professional guardians whose primary interest is to collect fees rather than protect individuals under guardianship; state guardianship systems that fail to adequately protect vulnerable individuals; unjustified isolation by guardians of wards from family or friends; and other forms of exploitation for the personal gain of guardians or guardianship agencies.

Partly as a response to these problems, new initiatives have emerged with the goal of altering, weakening, and even eliminating existing guardianship laws. Supported Decision-Making (SDM) is one initiative that has been promoted by many disability rights advocates. Proponents of this system, notably the Burton Blatt Project at Syracuse University and the Quality Trust for Individuals with Disability, generally appear to be advocating on behalf of individuals with less severe levels of intellectual disability, who are usually better able to interact with their environment and can often express their own desires and articulate their needs.

The Supported Decision-Making movement would change guardianship laws to address the status of those who need guardianship the least, if at all. In the process, these changes could weaken protections for those who are the most vulnerable, the very people for whom guardianship laws were originally written.

VOR maintains that problems with guardianship can be avoided through strong enforcement and monitoring and better access to information on guardianship, especially for family members and friends who make up the vast majority of guardians for people with intellectual and developmental disabilities (IDD). To eliminate guardianship or make it more difficult for family members and friends to pursue will leave people with IDD more vulnerable to the abuse, exploitation, and neglect that guardianship is designed to prevent.

VOR is deeply concerned about any effort to weaken the protections of guardianship. Attempts to replace guardianship with Supported Decision-Making affect not only those with severe intellectual disabilities but also people with IDD who are vulnerable to manipulation and coercion by others as well as individuals who lack awareness of the consequences of their own actions that may cause harm to themselves or others.

Guardians of people with IDD usually have an existing network of informed persons to assist them in making decisions for their wards, including other family members, direct care providers, and medical personnel. This is just what SDM claims to promote, but without the formalities and protection of court-ordered guardianship. The more individuals are able to express their wishes and play an informed, responsible role in their own decision-making process, the more their participation should be included. But it is irresponsible to remove an individual who lacks the capacity to make his or her own decisions from the protection of the court and ongoing evaluation. Most individuals with intellectual disabilities change over time, their needs change accordingly, and their ability to make their own decisions in an informed and responsible manner should be examined at regular intervals, to make sure that they are receiving appropriate care and that all of their needs are being properly addressed.

Changes to guardianship laws in many states have already been proposed. Families should keep abreast of these changes, and advocate for their loved-one if the changes could weaken the protections upon which he or she relies. VOR will do its best to keep you informed. Our vulnerable family members deserve nothing less than the protections that family guardians can provide.


VOR is a national organization that advocates for high quality care and human rights for people with intellectual and developmental disabilities. VOR advocates for a full range of services to address the full range of intellectual and developmental disabilities.

Tuesday, September 13, 2016

When a caregiver says, "I can't do this anymore!"

The New York Times has a “Modern Loveseries of weekly reader-submitted essays that “explore the joys and tribulations of  love”. This isn't exactly what I would call a love story, but more of an essay on the sometimes fragile bonds between caregiver and the one cared for.  “When Love Isn’t as Simple as Standing by your Man”, 9/9/16, is written by Eirek Gumeny who has endured a lifetime of health crises. For much of his adult life, his spouse has also been his caregiver.

Gumeny has cystic fibrosis, a progressive genetic disorder that  causes lung infections and limits the ability to breathe. He and his wife were proud of how they managed every health and life crisis that came along, believing that their love was indestructible. As Eirik’s health deteriorated to the point where he needed a double lung transplant, he and his wife faced this latest crisis with their usual grit and determination.

Then she threatened to leave him six weeks after a double lung transplant.  

As a parent of two profoundly mentally and physically disabled sons, I can relate to the spouse holding herself together until her husband was at least on his way to recovery and a better quality of life.  Holding in reserve the energy it takes for a full-blown meltdown until it can be done to full effect is not unfamiliar to me and other parents who have been through hell and high water with their disabled children. The demands on caregivers for people with complex and severe disabilities often leave the caregiver with no alternative than to seemingly do more than is humanly possible until he or she just can't do it anymore. 

Gumeny’s examination of the effects of his care on himself and his spouse provides insights into the loving relationship they had and why it was suddenly falling apart. After his initial shock and smoldering resentment for his wife’s seeming to abandon him and his ongoing need for her, he comes to realize how the bad effects on him of his double lung transplant were muted by his treatment and hospitalization. For his wife, the effects spiraled out of control:

“None of the pamphlets mention the psychological toll of waiting to die or of waiting for (even grimly rooting for) someone else to die so that you can get that person’s lungs. They don’t explain how not to feel like a monster about that. No one tells you that the physical scars are the easy ones.

“My wife, Monica, knows this all intimately now, better even than I do. While I was high on anti-anxiety medications and cannabis-based appetite stimulants, she was the one who had to remain clearheaded enough to clean up after me and keep us rolling in buckets of expensive prescriptions.

“She didn’t have the luxury of mentally checking out, the way I did. She would spend her mornings dealing with the gruesome symptoms of my death spiral, and then spend the afternoons trying to do her day job from my hospital room.”

"Every problem my waning health presented Monica had to handle twice over, worrying about me and worrying about her life after me if it all went sideways. Every time someone told me I was going to die, she had to sit there silently, taking it in.

“I could petulantly shrug off all the dire news and flip to the Cartoon Network, but she didn’t have that option. She had to deal with the information, the issues and the repercussions, acting as nursemaid, housekeeper, chauffeur and lawyer for me — the man who was supposed to share her life, not consume it.”

Monica did return, but, says Eirik, “Our love may be indestructible, but we sure as hell aren’t.”