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Family and guardian rights bill gathering momentum
After years of being stalled in the state Legislature, a bill that would boost the guardianship rights of family members of the developmentally disabled appears to have a chance of passage.
The bill (H. 1459), which was given a hearing last week by the Judiciary Committee, states that probate court judges should presume a spouse or parent is the proper person to be the guardian of an incapacitated person.
The Committee also heard testimony in support of a related bill (H. 1469), which would prohibit state or other authorities from charging a parent or legal guardian with abuse or neglect, based on the type of medical care the parent or guardian has chosen for an individual in their care.
While we are primarily concerned with legislation that affects people with developmental disabilities, both bills are about the rights of families to make decisions regarding the care of their loved ones. In a number of cases, family members have been overruled in their decision-making regarding loved ones, and, in some cases, have been removed from virtually all contact with them by state or clinical authorities.
Passage of the medical decision bill, dubbed “Justina’s Law,” is being sought by the family of Justina Pelletier, a teenager who spent nearly a year in a locked ward in Boston Children’s Hospital after doctors there disagreed with the family’s belief that Justina was suffering from mitochondrial disease. Even though the family was relying on a diagnosis of mitochondrial disease from a doctor at Tufts Medical Center, the Children’s Hospital doctors claimed her illness was psychological and accused Justina’s parents of medical child abuse.
Member’s of Justina’s family testified last Wednesday in support of H. 1469.
It was standing room only in last Wednesday’s Judiciary Committee hearing on bills regarding guardianship of persons with developmental and other disabilities (COFAR photo)
The impetus for the H. 1459, the bill promoting family members as guardians of the developmentally disabled, came from Stan McDonald, who has been unable to regain his guardianship of his intellectually disabled son, Andy. Stan has had to watch helplessly as Andy’s emotional needs have been ignored or neglected. Andy McDonald’s current court-appointed guardian has had as many as 100 wards at one time.
H. 1459 would also potentially apply to a case in which a probate court judge dismissed several members of the Duzan family as unsuitable to continue as guardians of Sara Duzan, a young woman with a developmental disability. The judge’s order set the stage for the eventual cutoff of all contact between the family and Sara for months, and forced them into an expensive and still ongoing legal battle over her custody.
A corporate provider executive director initially appointed as guardian of Sara Duzan had 24 other wards at the time, according to court records.
H. 1459 would not prevent a probate judge from removing family members as guardians or denying a family member’s bid to become a guardian, but it states that there must be “competent evidence” to rebut the presumption that a parent, in particular, is the proper person to be the guardian.
This year, H. 1459 has received support for the first time from the Massachusetts Developmental Disabilities Council (MDDC), a state-run organization that identifies priorities for care for people with those disabilities, and from the Arc of Massachusetts. The MDDC has listed the bill as one of its legislative priorities for 2015-2016.
In testimony to the Judiciary Committee last week, the MDDC stated that:
…the person who is chosen to be guardian must be someone who knows the individual well, can truthfully speak to the individual’s desires and has the time to devote to crucial decisions. In many cases, the natural choice for an individual’s guardian is one of the parents.
Testimony in support of H. 1459 was also submitted by COFAR and by a representative from the Institute for Community Inclusion (ICI), which is associated with the University of Massachusetts.
It is unclear when the Judiciary Committee, which has had both H. 1459 and 1469 before it since January, will vote on ether one.
In order to participate in the care of a developmentally disabled person, it is necessary to obtain guardianship of that person when they reach the age of 18. Guardians have legal rights to participate in individual support planning, a key element in the care of developmentally disabled persons, and to make other decisions that affect their wards’ services and well-being.
In some cases, parents and siblings of incapacitated individuals are passed over by probate court judges in considering who to appoint as guardians, and, in some cases, family members are removed as guardians by judges. In many of those cases, judges appoint either attorneys or corporate human services provider organizations as guardians, and those attorneys or providers may have no connection to the persons who need their representation. Some of those court-appointed guardians have large numbers of wards and are unable to advocate for them effectively.
Most court-appointed guardians for the developmentally disabled in Massachusetts appear to be paid for that work by the Department of Developmental Services. The ICI representative’s testimony characterized such payments to court-appointed guardians by state agencies as a “clear conflict of interest.” The testimony noted that guardians paid by state agencies may not always act in the best interest of the ward. This can “result in decisions to remove the family from virtually all decision-making authority in the care of their loved ones,” the testimony noted.
In appointing a guardian, a probate court judge is currently required by law to consider, in order of priority, a spouse, then a parent, and then “anyone else the court deems appropriate.” But a judge is not obligated to give more weight to a parent than to anyone else he or she deems appropriate. In fact, the law currently allows judges to pass over a person having priority and appoint anyone else they wish as guardian. That provision gives probate judges carte blanche to bypass the express wishes of parents and other family members. H. 1459 would remove that bypass provision.
Possible amendments to H. 1459:
COFAR’s testimony in support of H. 1459 suggested some changes that would strengthen it even further. Those positive changes include adding siblings to the list in the bill of suitable guardians. As the bill is currently drafted, it specifies only a spouse and parents of disabled individuals as being considered to be the proper guardian. In the case of developmentally disabled persons who are aging, siblings are often the only family members in a position to become guardians.
COFAR also suggested other reforms to the guardianship system in Massachusetts, either as amendments to H. 1459 or as separate legislation. Those reforms include:
- Limiting the number of wards a court-appointed guardian can have, and requiring court-appointed guardians to devote a certain minimum amount of time to the ward and to visit them a minimum number of times.
- Entitling family members of a developmentally disabled individual to an attorney if the Department of Developmental Services or another agency attempts to remove them as the guardian. In many cases, families are subjected to costly legal battles to retain or regain guardianship when state agencies seek to remove their guardianship rights.
- Placing the legal burden on agencies such as DDS or on court-appointed guardians to prove that restrictions on family contact are in the best interest of the ward.
Both COFAR and the Arc oppose a separate bill that would remove a requirement that individuals with developmental disabilities be clinically evaluated when new guardians are appointed. That bill (H. 1594) appears to be discriminatory in removing the evaluation requirement for people with intellectual disabilities but not for people with mental illness, for instance. We believe that such evaluations are necessary for all incapacitated persons, particularly when new guardians are appointed.
DDS still hasn’t applied for available funding for critical background check program
The Department of Developmental Services is on the hook to create a national background check program that will cost the Department more than $500,000 in the current fiscal year alone and will involve background checks of tens of thousands of current and prospective staff, according to a document posted on the Department’s website.
Yet DDS has continued to balk at applying for up to $3 million in federal grant funds that could help the Department develop the much delayed program. As a result, it appears DDS will have to continue to take money from departmental accounts that have been repeatedly shortchanged in terms of funding in recent years.
The online document states that DDS will be responsible for national background checks of more than 20,400 current human service corporate provider staff in the state, including some 6,500 staff working directly for the Department itself. The document appears to project that DDS will do national background checks on more than 10,600 new provider staff and 1,300 new DDS staff each year.
The document notes that in the current fiscal year, DDS will need a minimum of $510,000 to hire and train staff to be ready for the January 2016 implementation date for the first phase of the program, which involves undertaking background checks of new staff.
COFAR has been urging DDS for the past two years to apply for the federal grant funding, which has been available to states since 2010 under the Affordable Care Act or ObamaCare. In August 2013, a DDS official replied in an email that the state had not applied for the funding because state legislation authorizing national background checks by DDS was not yet in place. Once such legislation was enacted, the official wrote, “we will pursue the federal dollars.”
Even then, it wasn’t necessary to wait to apply for the funding, under the grant rules; but that long-awaited legislation was, in fact, signed into law by then Governor Patrick last August. Yet, on May 1 of this year, some nine months after the bill was signed, DDS was still considering whether to apply for the grant, according to a letter sent to us by the DDS general counsel. As of May 27, the matter was still under consideration, according to a follow-up letter from a DDS assistant general counsel.
This is a year in which DDS Commissioner Elin Howe has said the Department has had to deal with “huge and difficult (budget) reductions.” It would seem that the Department doesn’t have the luxury to spend months thinking about whether to accept federal assistance in paying for the development of a new, required program.
It’s not even a competitive grant, meaning it appears to be practically guaranteed money. A total of 24 states and Puerto Rico have been awarded close to $57 million in this funding. Thus far, Massachusetts is among 26 states that still haven’t applied for the grants.
The state legislation signed in August authorizes DDS to conduct national criminal background checks of persons hired to work in an unsupervised capacity with individuals with developmental disabilities. The law will ultimately require that both current and prospective caregivers in the DDS system submit their fingerprints to a federal database maintained by the FBI. The law applies to DDS employees, employees of corporate service providers to the department, and caregivers over the age of 15 of persons living at home.
Up to now, persons hired to care for clients in the DDS system have had to submit only to an in-state criminal background or CORI check, which identifies only criminal arrests and convictions in Massachusetts. CORI checks do not identify any convictions a job applicant might have from another state.
The new national background check requirements will not fully take effect until January 2019 for current employees, and until January 2016 for new employees. As we have noted a number of times, neither the Legislature nor the administration of then Governor Deval Patrick appeared to place a priority on getting the new program up and running quickly.
That lack of urgency appears to be further reflected in the continued failure by the Baker administration to apply for the available grant funds for the program. As noted, the program will not be a small undertaking.
In response to an information request we submitted in early March, the DDS general counsel stated in early May that the Department was in the process of “developing, designing, and preparing the various systems” needed to implement the new program. Departmental staff were meeting weekly “to plan for the procurement and design of information systems needed to receive and securely store confidential national background information..”
DDS is also planning to establish a unit within the Department of specialists to review both state and federal information in order to determine, apparently on a case-by-case basis, whether each applicant or existing employee is suitable for employment. DDS is currently drafting regulations to govern these processes.
Thus far, no additional funding has been allocated to DDS to implement the program. The 510,000 needed for the current year in implementation money has to come from somewhere. Why not take help when it’s offered?
‘Real Lives’ contract with private firm raises questions
As part of a push toward so-called self-directed services for the developmentally disabled, the state has established a payment system for those services that has exclusively benefited a Boston-based consulting firm.
The Department of Developmental Services is paying Public Partnerships LLC (PPL) close to $1 million a year in fees to perform what appear to be primarily check-processing and basic accounting services in connection with three self-directed services programs, according to records obtained from the Department under a Public Records Law request and to online contracting information. Those programs currently appear to serve less than 1,000 people in the DDS system.
In a written response to us, Marianne Meacham, the DDS general counsel, said it would be “inaccurate” to characterize PPL’s services as check processing and basic accounting, and maintained that “the functions performed by (PPL) far exceed” those services.
However, with the exception of requirements to elicit feedback from participants in one program and to handle customer service calls in another, the tasks or requirements listed in PPL’s contractual Scopes of Work for Fiscal Years 2014 and 2015 all appear to be check processing, accounting, or website management functions. When we had previously asked DDS for records showing or describing “all services provided to DDS by PPL” for fiscal 2014 and 2015, the Department referred us to the contractual Scopes of Work for those fiscal years.
Moreover, there were significantly fewer requirements listed in those Scopes of Work than in a Request for Response (RFR) issued by DDS to prospective bidders for a contract in 2008 for “fiscal intermediary services” for two of the self-directed services programs. PPL was selected in response to that RFR process.
The requirements in the 2008 RFR included helping program participants manage individual budgets for care. Individual budgets are a key feature of self-directed services. That requirement, however, was not included in either the 2014 or 2015 Scopes of Work.
In addition, a third self-directed services program appears to have been added since 2008 to PPL’s contract, potentially increasing the company’s fees; yet it does not appear that PPL was required to bid to become the fiscal intermediary for that additional program. It also does not appear that the addition of the new program to PPL’s Scope of Work resulted in a net increase in PPL’s work requirements.
According to information on file on the state Operational Services Division website at www.mass.gov/ufr, PPL has received administrative fees from DDS that grew from $529,435 in fiscal 2010 to $969,282 in fiscal 2014, an increase of over 80 percent.
Under the three self-directed programs, total state revenues processed by PPL increased by about 14 percent in that same time period. PPL processed about $14 million in state payments in Fiscal 2014, up from about $12.4 million in Fiscal 2010.
Meacham stated in her response that the contract with PPL incorporates all of the requirements in the original 2008 procurement solicitation. She did not address the apparent addition of the new self-directed services program to PPL’s contract without bidding.
Under self-directed or “person-centered” services, participants prepare “individual budgets” for care and services. Fiscal intermediaries are generally private firms that contract with the state to manage and direct payments from those individual budgets to service providers.
The stated goal of self-directed services is to give participants more choice and say in the care they receive. In what appears to have been a key effort to expand those programs, the Legislature passed the ‘Real Lives’ law last year, which appears to formalize the self-directed services process.
We have raised concerns, however, about the level of oversight of self-directed programs and whether the Real Lives law, in particular, will put too much decision-making power over an individual’s funds into the hands of private companies.
Traditionally, DDS itself has paid providers of direct-care and other services, and has managed those services in accordance with each client’s care plan, known as an Individual Support Plan (ISP). While ISPs still govern self-directed services provided in the DDS system, DDS appears to have given up at least some of its traditional control over the funding of those services.
Meacham’s response stated that the federal government has encouraged states to develop self-directed services programs, and requires that payments for those services be made by a private fiscal intermediaries. In 2008, DDS issued an RFR for fiscal intermediary services for two self-directed services programs in Massachusetts: the Adult Participant-Directed Program (PDP) and the Child Autism Spectrum Disorder program (ASD).
Subsequently, a third program, as noted, was added to PPL’s contract: the DDS/Department of Elementary and Secondary Education (DDS/DESE) home-based care program for children.
PPL was awarded the contract for the first two programs in 2008, and the contract has been extended each year since then. Fiscal 2016 may be the last year of the contract before it has to be re-bid through a new RFR.
Under PPL’s latest contractual Scope of Work for the three self-directed services programs for fiscal 2015, PPL is responsible for performing the following functions:
- Processing and sending checks to providers of services to participants in the self-directed services programs.
- Maintaining invoices which document expenditures.
- Maintaining a list of those providers and processing CORI or criminal background checks of providers in the PDP and ASD programs. The Scope of Work states that the DDS/DESE program is excepted from this process.
- Measuring performance of the providers, although the Scope of Work does not specify how that is to be done. The Scope of work referred to an “Appendix A” regarding “the performance measurements and performance measurement process.” However, no such appendix exists, according to a DDS assistant general counsel, who stated to us in an email that the reference to an Appendix A was inadvertent.”
- Eliciting feedback on the PDP program from participants through focus groups and a yearly satisfaction survey.
- Handling what are called “Tier 1” customer service calls and inform families and providers about forms and website processes for the DDS/DESE program.
- Training designated DDS staff on forms and processes for the DDS/DESE program.
The 2008 RFR, which resulted in the ongoing contract with PPL, includes requirements similar to those above, but also has what appears to be a much more extensive list of requirements for the fiscal intermediary. Those additional requirements in the 2008 RFR include “maintaining” individual budgets for participants and “helping participants manage their individual budgets.” This includes monitoring the participant’s spending and assuring that spending is only for approved services.
Other requirements in the 2008 RFR that do not appear in either the 2014 or 2015 contractual Scopes of Work for PPL include the following:
- Protecting program participants from abuse and neglect.
- Hiring service providers and developing their contracts.
- Serving as liaison between participants, their service coordinators, and service providers.
- Assisting providers in qualifying for waivers under the federal Medicaid program for Home and Community Based Services.
- Managing a network of Support Brokers, who are also hired to help participants manage their individual budgets and services.
- Tracking all complaints from participants and reporting quarterly on those complaints to DDS.
In her response, Meacham stated that PPL does track all complaints from participants and does take actions to protect participants from abuse and neglect, although she didn’t specify what those actions are. She also said PPL manages workers compensation policies and withholds state and federal taxes on behalf of program participants who hire caregivers out of their individual budgets.
Whether or not PPL’s contractual requirements have been reduced, it is apparently legal to negotiate a state contract with the winning bidder on an RFP to reduce work requirements; but a state contracting guidelines document states that those reductions must be minor in nature.
In her written response, Meacham also contended that it was not accurate to state that less than 1,000 people currently participate in the three self-directed service programs. However, Meacham’s response stated only that “over 300 families were enrolled as participants” in the ASD program in the last two fiscal years; that the PDP program “serves over 500 individuals” per year, and that the DDS/DESE program “has remained at a low level due to individuals not electing self direction.”
According to DDS information forwarded in March from state Senator Jenifer Flanagan’s office, a total of 784 people were self-directing their services in the DDS system. DDS was projecting that that number would double over the next four years to 1,568.
According to the PPL Scopes of Work for Fiscal 2014 and 2015, PPL gets paid under each of the three programs in different ways:
- PDP program: PPL receives a monthly fee of 6 percent of consumer’s total self-directed budget allocation.
- ASD program: PPL receives $131.25 per member per month.
- DDS/DESE program: PPL receives 8 percent of funds expended under the program.
In the final analysis, PPL may be charging DDS the market rate in fees for the services it performs under its contract. But payments of close to $1 million a year in fees to one firm to process payments under three relatively small programs raise questions for us about the value and price of these fiscal intermediary services.
We think the federal government should re-examine the amounts states such as Massachusetts are paying for fiscal intermediary services and should assess whether those services could be provided more cost-effectively in house.
Redacted state report appears to clear hospital that failed to treat developmentally disabled man
An investigative report by the Department of Public Health appears to have concluded that Lowell General Hospital was not at fault in the case of a developmentally disabled man who died after having been turned away twice by the hospital in 2012 without any significant treatment.
I’m using the word “appears” to describe the report’s finding because virtually all of the text was redacted in the version of the document provided to us last week by the DPH. Even the date of the report could not be determined from the document. We are asking the state Public Records Division to order the DPH to produce a more comprehensible version of the report.
As I previously reported, the 51-year-old man, whose name is being withheld, died in February 2012 after having been taken twice in two days to the Lowell hospital and sent away each time.
The man had been having difficulty breathing and was sweating profusely when he was taken to the hospital on both February 6 and 7. On the morning of February 7, he was sent back by the hospital to the group home in which he was living with a prescription. He died, apparently en route to the hospital, after staff in his group home called an ambulance for the third time on the afternoon of February 7.
The cause of death was listed on the death certificate on file in the City of Lowell as acute respiratory failure and aspiration pneumonia, which can indicate choking. A death report form filed with the Disabled Persons Protection Commission stated that the man died after experiencing cardiac arrest.
The DPPC referred the case of the man’s death to the DPH, apparently because an allegation about improper care in the case involved the hospital and not the man’s group home, which is operated by the Department of Developmental Services.
It seems surprising that state investigators would find no problems with the policies or procedures of a hospital that apparently failed to provide any significant treatment to someone who subsequently died due either to choking or a heart attack. Common sense would imply that something went wrong somewhere in the hospital’s procedures between the time the man first arrived at the hospital exhibiting signs of physical distress and his death the next day. But if the state did find something wrong, it’s not evident in the version of the report we received.
In February of this year, we requested a copy of the DPH’s report on the case, but the Department denied our request, citing the deceased man’s privacy rights. We appealed to the Public Records Division, which last month upheld our appeal, ordering the DPH to produce the report or explain why it was exempt from the Public Records Law.
As we have previously noted here, our interest lies in whether the DPH examined the adequacy of Lowell General Hospital’s policies and procedures for treating persons with developmental disabilities. This case suggests to us that there may have been inadequate training of hospital health care personnel in the treatment of developmentally disabled persons. The lack of such training has become an issue of concern to advocates for the disabled and to many policymakers.
Given the narrow scope of our interest, we indicated prior to the Public Records Supervisor’s ruling that we were open to accepting a redacted version of the DPH report that did not reveal the man’s name or medical information about him that might violate his privacy. We said, however, that we would not accept a report that was redacted to such an extent that we were unable to substantively discern either its findings or the support for its findings.
Unfortunately, that is the case with the document we have received from the DPH. The redactions in this report appear to go far beyond what might be construed to be medical files or information. It is impossible to tell from the document whether the Department investigated the hospital’s policies or procedures for treating individuals with developmental disabilities or whether the DPH examined the training of staff in that regard. It is also impossible to tell whether the report contained any recommendations regarding hospital policies and procedures.
(Again, feel free to review the DPH report yourself at this link.)
The only statements in the DPH report that were not redacted and that appear to be relevant to the investigation of the case are four apparent findings in what is labeled the synopsis on the first page. But even those findings have been at least partially whited out so that they cannot be fully understood. Those apparent findings are that:
1. There was an allegation that hospital emergency staff were “ill-equipped” to deal with something. We don’t know what that something was because the language is redacted. We assume it was the treatment of the developmentally disabled man. However, due to the redaction, it was impossible to determine that with any certainty.
2. Based on a review of medical records and interviews with staff, “the allegation was determined not to be valid,” the report stated. There is no text in the document providing any support or reasoning for the finding. The finding indicated that in addition to medical records, three other things were reviewed as well, but the list of those three things was redacted.
3. Based on a review of something else that was similarly redacted, “appropriate care was rendered.” Again, no further support or information was given for this finding.
4. The hospital’s discharge plans “were appropriate and communicated to”…redacted.
That is the extent of the readable text in the report that appears to be relevant to the investigation. The full report is apparently more than five pages long. However, after a heading labeled “Survey findings” on page 2, the report is entirely blank with the exception of one partial sentence on page 5 that states: “Review of the Medical Screening Examination dated 2/7/12 indicated”… The sentence breaks off at that point and there is nothing further in the document. February 7, 2012 was the date of the disabled man’s death.
In his April 29, 2015 order to the DPH to turn over the report to us, Public Records Supervisor Shawn Williams wrote that the Public Records Law strongly favors disclosure by creating a presumption that all governmental records are public records. In addition, Williams’ order noted that it is the burden of the department that possesses the requested records to demonstrate the application of an exemption in order to withhold any of those documents.
In our view, the DPH has failed to comply with the letter or spirit of the Public Records Law, and has not met its burden of demonstrating that the wholesale redactions of the report were either necessary or complied with the requirements of the records law exemption.
We sent a letter last week to Williams and to another attorney in the Division who handled our case to let them know of the nature of the document the DPH produced. We’re confident Williams will agree with us that the DPH needs to do better that what they have done in providing the requested report.
Federal government reviewing group home data in MA and two other states
The Inspector General in the U.S. Department of Health and Human Services has spent the past two years conducting a review of data on abuse and neglect in privatized group homes in three states, including Massachusetts.
In an August 21, 2013 letter written to U.S. Senator Chris Murphy of Connecticut, HHS Inspector General Daniel Levinson said his office had begun to examine data on admissions of persons from group homes and “nursing facilities” to hospital emergency rooms in Massachusetts, Connecticut and New York.
We obtained Levinson’s letter from the IG’s Freedom of Information Act Division. The letter promised to share the results of the IG’s findings with Senator Murphy’s office and left open the possibility of expanding the review. But the letter provided no details on how the review might be expanded.
Senator Murphy, who requested in March 2013 that the IG investigate group homes for people with developmental disabilities, has not responded to numerous requests from us for comment on the IG’s review.
It is not clear when the IG’s examination will be completed.
Despite what appear to be significant limitations in the scope of the analysis, the IG’s review appears to constitute one of the few instances in which the federal government has investigated the privatized group home system of care in the U.S. In contrast to that relative free ride given to the group home system, the federal government has filed dozens of lawsuits in recent years alleging substandard care in state-run, congregate-care facilities around the country.
There has been mounting evidence that abuse and neglect has been a continuing and growing problem in community-based, group homes. The IG investigation was requested by Murphy in the wake of a series of articles in The Hartford Courant that documented dozens of deaths, injuries, and other problems stemming from inadequate care and supervision in group homes in Connecticut.
Murphy asked the HHS IG to “focus on the prevalence of preventable deaths at privately run group homes across this nation and the widespread privatization of our delivery system.”
In his August 2013 letter in response to Murphy’s request, Levinson stated that for Connecticut, Massachusetts, and New York, “we are analyzing data to identify instances when Medicaid beneficiaries were transferred from group homes or nursing facilities to hospitals for emergency treatment. We are analyzing data by facility to determine whether certain facilities have excessive rates relative to those of their peers.”
Due to the way states collect the data, the IG’s analysis would include all Medicaid patients and not only those with developmental disabilities, Levinson said.
Given the vagueness of Levinson’s description of his office’s review, we have a number of questions about it. Levinson’s letter, for instance, didn’t specify what he meant by “nursing facilities,” and didn’t indicate which “peers” the emergency hospital treatment rates are being compared to. Are the group homes and nursing facilities being compared to developmental centers, for instance? It’s also not clear what the data will mean if it lumps together people with and without developmental disabilities.
Moreover, it is not clear whether the IG’s review has included data on actual deaths in group homes, which is what Murphy specifically asked the IG to examine, or whether the review has included differences in mortality rates of persons transferred from state-run to privately run care. A number of studies have shown increases in mortality rates among those transferred individuals.
The VOR, a national advocacy organization for the developmentally disabled, pointed out in recent testimony to a congressional subcommittee that higher mortality rates have been documented in Virginia, Nebraska, Tennessee, and Georgia in the wake of the DOJ’s deinstitutionalization settlements.
Based on Levinson’s letter, the IG’s review also doesn’t appear to have covered issues such as the quality of care in general in group homes, and it does not appear to be concerned with financial aspects of privatized care. All of those things are long overdue for investigations at both the federal and state levels of government. In the meantime, the federal IG’s investigation appears to be at least a step in the right direction.
The federal government’s cruel pursuit of deinstitutionalization
When is the federal government — particularly the Department of Justice — going to recognize or admit that deinstitutionalization of the developmentally disabled hasn’t worked as planned?
The DOJ seems to have closed its eyes to the realities on the ground in continuing to file lawsuits around the country to close state-run care facilities. This has caused “human harm, including death and financial and emotional hardship,” according to information compiled by the VOR, a national advocacy organization for the developmentally disabled and a COFAR affiliate.
While the DOJ has not filed such a suit against the State of Massachusetts, that may be because the state has closed, or is in the process of closing, four out of six developmental centers that were in operation as of 2008. But with two developmental centers remaining as well as other programs that the DOJ considers to be institutional, such as sheltered workshops, Massachusetts could well become a target for a lawsuit at any time.
The VOR filed testimony last month, urging a congressional subcommittee to adopt legislative language that would require the DOJ to do two very commonsense things before filing more lawsuits to close state-run facilities:
- First consult with the residents or their legal guardians “to determine residents’ needs and choices with regard to residential services and supports,” and,
- Second, do not “impose community-based treatment on patients who do not desire it.” This second requirement is consistent with the 1999 U.S. Supreme Court decision in Olmstead v. L.C.
The DOJ’s continued pursuit of class-action litigation to close developmental centers and other facilities has led to the irony that those lawsuits are generally opposed by the families of the residents on whose behalf the suits are ostensibly filed. As U.S. District Court Judge J. Leon Holmes wrote in 2011 in dismissing a lawsuit brought by the DOJ against the State of Arkansas to close the Conway Human Development Center center there:
…the United States is in the odd position of asserting that certain persons’ rights have been and are being violated while those persons – through their parents and guardians – disagree. (U.S. v. Arkansas, June 8, 2011, dismissal order).
Judge Holmes’ decision noted that evidence in the case showed that the parents and guardians of residents of the Conway Center “are overwhelmingly satisfied with the services there and believe that the Center is the least restrictive, most integrated placement appropriate for their children and wards.” Moreover, the judge’s decision stated that the weight of the evidence in the case failed to support the DOJ’s contention that care at the Conway Center was substandard.
The VOR notes that the DOJ’s Civil Rights Division has filed more than 45 legal enforcement actions in 25 states since 2009 to limit or shut down state care. On a website listing all the litigation it has filed, the DOJ includes the heading “Olmstead: Community Integration for Everyone.”
It’s not true, though, that Olmstead requires community-based care for everyone. The Supreme Court decision established a right to community-based housing and care only when:
1. The state’s treatment professionals have determined that community placement is appropriate,
2. Transfer is not opposed by the affected individual, and
3. The placement can be reasonably accommodated, taking into account the resources available to the state and the needs of others with mental disabilities.
Despite those clear conditions, the DOJ has plowed ahead with its community-integration lawsuits under the explicit assumption that all institutional care should be ended and everyone should be sent into community-based care, whether they want to go or not.
This viewpoint by the DOJ is a misinterpretation of the Olmstead decision, and it has had tragic consequences, according to the VOR. The organization pointed out in its testimony that higher mortality rates have been documented in Virginia, Nebraska, Tennessee, and Georgia in the wake of the DOJ’s deinstitutionalization settlements.
Those problems have occurred because so many of the privatized group homes to which the people formerly in the state facilities have been transferred are poorly monitored and are afflicted by high turnover and poor training of staff. Yet, that reality does not appear to have been recognized by the DOJ.
In Virginia, a state sued by the DOJ to close its state-run developmental centers, the risk of mortality for those individuals who left those centers was double that of those who stayed.
In Tennessee, DOJ lawsuits resulted in the closure of one developmental center in 2010 and the downsizing of two others. In that state, deaths among people released from institutions nearly doubled between 2009 and 2013. In addition, according to The Tennessean, a 2013 State Comptroller’s audit reported a lack of access to adequate medical and dental care, incarcerations, and hundreds of reports of abuse, and neglect and exploitation among the transferred developmental center residents.
In Nebraska, a 2014 monitoring team report found that of 47 persons considered to be “medically fragile,” who were transferred from a developmental center in 2009 as a result of a DOJ settlement, 20 (or 43 percent of them) subsequently died.
In Georgia, a 2010 a DOJ settlement agreement required the closure of all state-operated developmental centers and the transfer of 1,000 persons with developmental disabilities as well as 9,000 persons with mental illness from facility-based care. In March, The Augusta Chronicle reported that of 499 individuals with profound developmental disabilities, who had been transferred from the state developmental centers under the DOJ settlement, 62 (or 12%) died unexpectedly.
The Augusta Chronicle article discussed the case of Christen Shermaine Hope Gordon, a 12-year-old girl who died in community-care after being transferred from the Central State Hospital in Milledgeville, GA. The article recounted a litany of poor decisions and poor care that appear to have led to Christen’s death.
In a letter to the DOJ in January of this year, Margaret Huss, president of Intellectual Disabilities Advocates of Nebraska, urged the DOJ to ask critical questions about the mortality figures and other data regarding the transfer to community-based care prior to filing further lawsuits to close state facilities. “An increased risk of death should not be the unintended consequences of the worthy goal of community integration,” Huss’s letter stated. As of May 1, the DOJ had not responded to her letter.
That an increased risk of abuse, neglect, and death exists in community-based care has long been recognized, but few policy makers or people elected to office have been willing to stem the tide of deinstitutionalization. In March 2013, U.S. Senator Chris Murphy of Connecticut did call for an investigation of abuse and neglect in privatized group homes around the country, in response to a series by The Hartford Courant detailing those problems in that state.
In a letter to the Office of the Inspector General in the U.S. Department of Health and Human Services, Murphy termed the level of abuse and neglect in group homes “alarming.” Murphy asked the IG “to focus on the prevalence of preventable deaths at privately run group homes across this nation and the widespread privatization of our delivery system.”
But more than two years after Murphy’s request, it is not clear that the HHS Inspector General ever did undertake such an investigation. The IG’s office has so far not released a report and did not respond to an email query from us on April 30, seeking information on whether an investigation has been undertaken and what its status might be.
Senator Murphy’s office also did not respond to repeated inquiries from us last week as to whether Murphy ever received a response from the IG to his call for an investigation or whether he ever followed up with the IG after his original request in 2013.
Unfortunately, lawmakers in the U.S. Senate, in particular, have also not been supportive of VOR’s proposed legislative language to require the DOJ to consult with families before filing further lawsuits against state care. While language was inserted in a House appropriations bill for the DOJ last year at VOR’s request that protections for institutional care be considered by the DOJ as appropriate for those who desire it, that language was later watered down.
We can only hope that folks begin to wake up in Washington and elsewhere to overwhelming evidence that deinstitutionalization accompanied by privatization is not working, and that someone finally steps forward to slow both of those trends.
The HW&M budget has great news for sheltered workshops, not so good news for state care in general
The great news is the House Ways and Means Committee re-inserted protective language last week in the proposed Fiscal Year 2016 state budget that would protect vital sheltered workshops from closure.
Representative Brian Dempsey, chair of the committee, who was instrumental last year in keeping the workshops open, has renewed his commitment to those facilities in this year’s budget go-round with the administration.
The bad news is that the House Ways and Means budget continues to squeeze state-run programs for the developmentally disabled and maintains the administration’s disproportionate increase in proposed funding for the corporate, provider-run group home system. But let’s look at the good news first.
Last spring, after a lobbying campaign by advocates of the workshops, Dempsey placed language in the House Ways and Means version of the current-year budget, stating that DDS “shall not reduce the availability or decrease funding for sheltered workshops serving persons with disabilities who voluntarily seek or wish to retain such employment services.” The protective language survived a House-Senate conference committee in June, largely due to Dempsey’s support.
While that protective language in the budget appeared to offer the workshops an indefinite reprieve, the proposed fiscal 2016 budget submitted by Governor Charlie Baker in March removed the language. As a result, the workshop supporters went to work once again in the past month, calling Dempsey’s office and urging their local legislators to reinstate his language.
Dempsey did reinstate the language; and in a conference call last week concerning the House Ways and Means budget plan, DDS Commissioner Elin Howe indicated that the administration did not intend to file any amendments to remove the language from the budget legislation. It also appears that organizations representing corporate DDS providers, such as the Association of Developmental Disabilities Providers, have not filed amendments to close the workshops.
It is now up to the Senate and specifically to Senator Karen Spilka, the chair of the Senate Ways and Means Committee, to follow Rep. Dempsey’s lead and insert the same protective language in the Senate budget.
The workshops first came under attack from the administration of then Governor Deval Patrick, which targeted them for closure as of this coming June, arguing that they were “segregating” disabled persons from their peers in the mainstream workforce. But families of the workshop participants fought back. They maintain that the facilities are fully integrated into the surrounding communities and provide the participants with meaningful activities and valuable skills.
Sheltered workshops provide developmentally disabled persons with a range of assembly jobs and other types of work, usually for a small wage.
Meanwhile, the bad news we were talking about largely concerns funding for DDS group homes, remaining developmental centers, and service coordinators. The House Ways and Means budget proposal would cut the developmental center line item even deeper than Governor Baker has proposed and would reduce the service coordinator line item below the amount proposed by the governor. It would also fund the state-operated group homes at a level below what DDS considers a “maintenance level.”
While the state has closed three of six existing developmental centers since 2008 and is in the process of closing a fourth, funding appropriated to run the remaining three centers may have dropped too fast to maintain existing services in those facilities. As we recently noted, years of cuts in the developmental-center line item have lately resulted in the closing of several cottages at the Wrentham Developmental Center, requiring residents to be moved from long-time residential locations.
The Wrentham Center has become a major destination for persons transferred from the developmental centers that have been closed in recent years.
While Governor Baker’s fiscal 2016 budget would cut the developmental center line item by about $375,000 from projected spending, the House Ways and Means budget would cut it by $1 million beyond that.
DDS-operated group homes would get the same amount in fiscal 2016 under the House Ways and Means budget as under the governor’s version of the budget, which amounts to a $2 million reduction from what DDS considers a “maintenance budget.”
Also, the House Ways and Means budget would fund the DDS line item that pays service coordinators at a level $538,000 less than what Baker has proposed. In March, DDS Commissioner Howe had said Baker’s budget would fund the service coordinator line item at $1.8 million below what DDS had requested. So the House Ways and Means budget further reduces that proposed funding for the service coordinators next year by more than half a million dollars.
The service coordinators, whom Howe has referred to as “the heart and soul” of DDS, are responsible for ensuring that clients throughout the system are receiving services to which they are entitled. The service coordinators have seen their caseloads rise dramatically in recent years.
In last week’s conference call, Howe noted the shortfalls in funding under the House Ways and Means budget for the developmental centers, DDS-operated group homes, and service coordinators. But in what may be a sign of the priority that this administration places on these services, Howe said the Department did not plan to seek amendments to the House budget to increase that funding.
At the same time, the House Ways and Means budget preserves a major funding increase to the corporate providers in the coming fiscal year. The Ways and Means plan provides for the same $35 million increase from the current year for the DDS corporate residential line item that Baker has proposed. As of July, this line item will have been increased by more than 28 percent since the filing of a lawsuit by the corporate providers in June 2014 against the then Patrick administration.
While we understand that direct-care workers in corporate, provider-operated group homes are woefully underpaid, it’s not clear how much of the additional funding being sent to the providers is, or will be, going to those workers. As we have noted, the hundreds of executives working for those provider agencies in Massachusetts have been making out quite well.
The Baker administration is apparently fine with that state of affairs. Terming the House Ways and Means plan “a very reasonable budget,” Howe pointed out that it would add $17 million to the DDS bottom line compared to the governor’s budget. Under the House Ways and Means budget, the Community Day and Work line item would be almost $10 million higher than what the governor proposed.
The House Ways and Means budget also would provide $12.4 million under a new DDS line item to implement the expansion of DDS eligibility to people with autism, Prader-Willi, and Smith-Magenis Syndrome.
While that expansion of eligibility funding is certainly needed, the Senate has a lot of other work in store for it as well. We hope that in addition to protecting the sheltered workshops, the Senate begins to address the imbalance in the budget between corporate and state-run DDS care.
Human service providers’ lawsuit boosts their state funding despite deficit
While programs and services are being cut throughout state government as a result of projected budget shortfalls, corporate human services providers have gotten hundreds of millions of dollars in additional state funding due, at least in part, to a lawsuit they filed against the state.
The irony is that the U.S. Supreme Court has just ruled in a separate case that providers cannot sue to raise Medicaid service rates. So, it’s not clear to us that the Massachusetts providers were on solid legal ground in filing their lawsuit.
In June 2014, the providers sued the then Patrick administration, arguing that the administration was not boosting state funding to them fast enough to satisfy a timetable set in a 2008 law known as Chapter 257. Chapter 257 established formulas and timetables for increasing provider funding rates.
As a result of the lawsuit, both the Patrick administration and the incoming Baker administration approved major funding increases to the provider-run group-home line item in the Department of Developmental Services budget, even as it was becoming clear the state was facing major budget shortfalls in the current and coming fiscal years.
In a press release issued on March 4, the day he submitted his Fiscal Year 2016 budget to the Legislature, Governor Baker stated that his administration had allocated $30 million “to resolve litigation and adjust Chapter 257 rates for human service providers.”
The $30 million referred to in the governor’s press release may have understated the impact of the lawsuit. Baker’s proposed funding for the provider group-home line item in the DDS budget for fiscal 2016 is more than $230 million higher than the amount appropriated for that line item in fiscal 2014 when the provider lawsuit was filed. That is a 28 percent increase.
In contrast, the line item for the state developmental centers would be cut in that same period by almost 9 percent, and state-operated group homes would get an increase of about 13 percent in that time period.
In what sounds like a similar lawsuit to the the litigation in Massachusetts, service providers in Idaho had argued in federal court that Idaho had failed to raise Medicaid payments to them as outlined in a federally approved formula. But the U.S. Supreme Court ruled on March 31 that private providers cannot sue for higher Medicaid reimbursement rates.
In the suit filed by the Massachusetts providers, state Superior Court Judge Mitchell Kaplan ruled in January that the state had violated Chapter 257 by not setting higher rates for providers. In response to the suit, the then Patrick administration had initially argued that Chapter 257 could be fulfilled only if the state itself had adequate revenues to do so.
But Judge Kaplan ruled that the state had to comply with the higher rates required under Chapter 257 regardless of whether the funding was available or not. That would mean that in order to fulfill the requirements of Chapter 257, funding would have to be cut in other areas, which is what has happened.
Like the Idaho providers, the Massachusetts providers had argued that the inadequacy of the state funding was causing them to fail to keep up with rising costs and was resulting in lower paid staff and high staff turnover as well as poorer quality services. We have maintained, though, that the funding has been adequate to support high salaries for executives running the provider corporations. Close to $100 million a year is spent on those executive salaries in Massachusetts.
As we’ve noted before, the major funding increases in the provider line item in the past year have increased an already existing imbalance in funding between that line item and accounts for state-run services.
One example of that imbalance is the state-run developmental center line item, which will be some $10.6 million less under Baker’s fiscal 2016 budget than it was in fiscal 2014. This has led to the necessity of closing several cottages at the Wrentham Developmental Center in the past several months, requiring residents to be moved from long-time residential locations.
An April 2 memo sent to Wrentham Center staff referred to an “immense challenge” in meeting budget constraints facing the Center in the current fiscal year, and a “yet another difficult budget forecast for Fiscal Year 2016.”
At the time the Massachusetts providers filed their suit, a spokesman for the providers explained that they had rejected an offer from the then Patrick administration to meet them more than part-way by providing 90 percent of the full funding increase specified under Chapter 257 as of January 2015.
“…in the end, it wasn’t enough,” the spokesman for the providers said. “At this point, we’ve been as patient as we can be and the law is the law and we want the Commonwealth to abide by the law. Every day that full implementation is delayed, the imbalance and the unfairness grows.”
The providers and the Baker administration, however, do not seem to be as concerned about the continuing and growing imbalance in funding between provider and state-run services.
Following the money on three new DDS-related laws
More than five months ago, three important pieces of legislation affecting people with developmental disabilities were ceremonially signed into law with a lot of fanfare by then Governor Patrick; but there has been little information since about the status of these new laws.
We are attempting to find out via Public Records law requests to the Department of Developmental Services what is being done to implement these laws, how much it all will cost, and where the money is going. The Department does not seem eager to part with that information voluntarily.
1. National Background Check law: This new law authorizes national criminal background checks for persons hired to work in an unsupervised capacity with persons with developmental disabilities. It will ultimately require that both current and prospective caregivers in the DDS system submit their fingerprints to a federal database maintained by the FBI.
We previously reported that the requirements under this law have been delayed by up to four years.
On March 2, we sent in information request to DDS, asking what steps the Department had taken to implement the law and whether the Department has finally applied for grant funds available since 2010 from the federal Centers for Medicare and Medicaid Services under the Affordable Care Act to design a national background check program.
To date, despite a follow-up email on March 30, we have received no response from the Department to our questions. As a result, we submitted a Public Records request to the Department on March 31, asking for all reports, memoranda, and other records that concern those issues. Legally, state agencies do not have to respond to information requests, but they do have to respond within 10 days to requests for public records.
More than a year and a half ago, a DDS administrator said the Department had not applied for an ACA grant, which can be as high as $3 million per state, because the legislation authorizing national background checks in Massachusetts had not yet been passed.
2. The ‘Real Lives’ law: This law introduces what is called “person-centered planning” in providing care and services to persons with developmental disabilities.
On March 3, we submitted a Public Records request to DDS, seeking records pertaining to all payments made by the Department in Fiscal Years 2014 and 2015 to a company called Public Partnerships, LLC. According to a DDS website PowerPoint document, Public Partnerships has begun contracting with DDS to provide “individualized fiscal intermediary” or financial management services to participants in the Real Lives program.
While the Real Lives law is touted as providing individuals with more choice and “self determination” in the services they receive from DDS, we are concerned the law will transfer decision-making authority from guardians and family members of disabled individuals to private financial management companies.
Thus far, it is unclear exactly what services Public Partnerships has or will provide under the law and how much it has or will be paid to do so. The DDS PowerPoint states that the financial management services “may include” fiscal accounting, tax withholding, criminal background checks, and other services. The PowerPoint provides no specifics, however.
As of early March, it did not appear that DDS had yet developed policies or regulations regarding the Real Lives law, and more specifically concerning the nature of the financial management services that will be used under the law. The most recent policy statement from DDS concerning “self-determination” is dated January 2010.
Public Partnerships is not new to contracting with DDS. The firm received $14 million in funding from DDS in Fiscal Year 2014, according to an online state site that tracks spending on human services contractors. It was not clear what services Public Partnerships provided to DDS in fiscal 2014.
The state’s Open Checkbook website listed a total of $10.9 million in DDS payments to Public Partnerships so far in the current fiscal year. The website, however, also does not specify the services provided for that funding.
Public Partnerships bills itself on its website as “a full-service financial management services firm dedicated solely to providing fiscal/employer agent, third party administrator, and related support services to public agencies.” The site adds that the firm helps state, county, and local public agencies “implement a participant-directed service model.”
Audited financial statements for the company and a Colorado affiliate, available on the state contractor site, disclose that Public Partnerships and its Colorado affiliate received more than $1 billion in total revenues in fiscal 2014. Public Partnerships is a subsidiary of Public Consulting Group, a Boston-based consulting firm, which has received $3.3 million so far in the current fiscal year from several agencies in the Executive Office of Health and Human Services.
3. The DDS eligibility law: In September 2014, we first asked DDS for information on the funding available to carry out this new law, which requires that the Department expand services to include persons with autism and conditions known as Prader-Willi and Smith-Magenis Syndrome. We received no response to that request for information.
Then on March 2 of this year, we sent an email to the DDS commissioner, asking whether the Department has developed a cost estimate for expanding services under the new law and what that estimate might be. Having received no response to that question, we have asked in a Public Records request for reports, memoranda, and other documents that concern the potential cost of the new law.
You may wonder why we have even bothered to send information queries to DDS, given that they don’t seem to respond to them. The answer is they have, at times, responded to those queries. In the past year or so, it seems, they’ve stopped responding. It’s hard to say why. Maybe they they’ve adopted a new policy of circling the wagons and cutting off information.
Guardian rights bill would help families caught in the DDS-probate system
As we have chronicled a number of times, family members can get shut out of the process when their loved ones with developmental disabilities enter the state’s system of residential care.
This is particularly the case when family members lose their legal status as guardians of disabled persons. That, as we have seen, can happen for reasons that are not always fair or just.
That’s why we strongly support a bill (H. 1459) now before the state Legislature that would require probate court judges to give more consideration than they now do to the appointment of family members as guardians of incapacitated persons.
The bill, which has been filed for years by Representative David Linsky, has never made it out of committee. We understand, though, that the Massachusetts Developmental Disabilities Council, which advises the state on issues of concern to the developmentally disabled, has put this bill on their priority list for passage this year.
The bill states that the spouse, parent or parents or their designees of an incapacitated individual should be presumed to be suitable guardians unless competent evidence is introduced to the contrary.
Obtaining guardianship when a developmentally disabled person reaches the age of 18 is essential in participating in the care of that person. Guardians have legal rights to participate in individual support planning, a key element in the care of developmentally disabled persons, and to make other decisions that affect their wards’ services and well-being. Even the parents of a developmentally disabled person over 18 will find they have virtually no say in that person’s care if someone else is appointed as his or her guardian.
But the appointment by probate court judges of guardians of developmentally disabled persons is often haphazard. In many of those cases, judges appoint either attorneys or corporate human services provider organizations as guardians, and those attorneys or providers may have no connection to the persons who need their representation.
Attorneys, corporate providers, and others who are appointed to guardianships of developmentally disabled persons are generally paid for those services by DDS. According to DDS records, eleven of the 20 highest-paid guardians by the Department in Fiscal Year 2014 were either corporate providers or attorneys.
There seems to be a view among at least some judges and within DDS that corporate providers or attorneys make more suitable guardians than do family members, particularly if those family members are seen as aggressive or contentious in their relationships with DDS. We think this dismissal of families is wrong and has caused a lot of needless suffering among families, not to mention hindering adequate care.
Moreover, the view that the so-called experts and not family members know what is best for disabled persons appears to be at odds with the federal Developmental Disabilities Assistance and Bill of Rights Act, which states that family members of developmentally disabled individuals shall be the “primary decision-makers” in the care of such persons.
It would seem that too few people in DDS or the probate court system in Massachusetts are familiar with the DD Assistance and Bill of Rights Act.
In 2012, DDS petitioned a probate judge to remove Patricia Feeley as her son’s guardian because Feeley would not agree to a Department plan to place her son in a residential care setting without 24-hour nursing. DDS agreed to dismiss its petition a year later, but only after the Department had proposed to appoint a Woburn-based attorney, who had never met Feeley’s son, as his guardian.
In 2010, Norfolk County Probate Court Judge George Phelan dismissed the entire Duzan family as unsuitable to continue as guardians for Sara Duzan, a young woman with a developmental disability who had been repeatedly abused with unnecessary restraints in a series of provider-operated residential care settings.
In his order, Phelan discounted the family’s claims that Sara was being abused, and contended the family itself had “demonstrated through a variety of encounters their vacillation, indecisiveness, and inability to work with others.” In the place of Sara’s family, Phelan appointed the executive director of the Arc of Greater Fall River, a DDS corporate provider, as her guardian.
Phelan’s order set the stage for the eventual cutoff of all contact between the family and Sara for months, and forced them into an expensive and still ongoing legal battle over her custody. But vacillation, indecisiveness, and even the inability to work with others, even if that were the case, do not seem to us to be sufficient reasons to deny an entire family the right to guardianship of a loved one.
In a third case, Stan McDonald voluntarily relinquished his guardianship nearly 30 years ago of his intellectually disabled son, Andy, as part of a custody battle with his former wife. What followed were years, with few exceptions, of poor decision-making regarding Andy’s care by a number of court-appointed guardians.
The idea for H. 1459 came from Stan McDonald, who has still been unable to regain his guardianship of Andy, and has had to watch helplessly as Andy’s emotional needs have been ignored or neglected. Andy McDonald’s current court-appointed guardian has had as many as 100 wards at one time. The provider executive director appointed as guardian of Sara Duzan had 24 other wards at the time, according to court records.
The current probate law does state that in appointing guardians, the court should consider, in order of priority, a spouse, then a parent, and then “anyone else the court deems appropriate.” But a judge is not obligated to give more weight to a parent than to anyone else he or she deems appropriate.
In fact, the current probate law goes on to state that: “The court, acting in the best interest of the incapacitated person, may pass over a person having priority and appoint a person having a lower priority or no priority.” That provision gives probate judges carte blanche to bypass the express wishes of parents and other family members. H. 1459 would remove that provision.
There are a number of additional reasons to support of H. 1459:
- It would lower caseloads for attorneys who are not able to advocate effectively for the often large numbers of incapacitated persons for whom they are responsible. It would also reduce the cost to taxpayers in paying these attorneys.
- H. 1459 would also reduce the use of scarce court resources expended on families disputing the appointments of non-family members to be guardians of their loved ones.
By itself, H. 1459 is just one of a number of measures that are needed to reform the dysfunctional DDS/probate court system of care for people with developmental disabilities. Other measures are needed as well. For instance, there should be a mediation process available in guardianship disputes so that families are not forced to impoverish themselves in court litigation when they do lose their guardianship rights.
In the absence of a mediation process, the state should be required to appoint an attorney to represent an individual who gets involved in a dispute with the state over guardianship and can’t afford an attorney on their own.
Also, in light of the Developmental Disabilities Assistance and Bill of Rights Act, family members and other caring individuals should have standing to advocate for an individual even if they are not the person’s guardian. And limits are needed on the number of persons that individual attorneys, corporate guardians, and others should be allowed to represent as guardians.
COFAR blog 