Harvard researcher looks for the key to understanding the link between Down syndrome and Alzheimer’s disease

March 8, 2017 1 comment

The link between Down syndrome and Alzheimer’s disease has become the subject of increasing scientific interest, and a major new study is seeking to shed further light on that connection.

Dr. Florence Lai of Harvard University, McLean Hospital in Belmont, and Massachusetts General Hospital, is the lead Massachusetts investigator in a multi-center, five-year study funded by the National Institutes of Health.

Dr. Lai headshot

Dr. Florence Lai

In an interview with COFAR, Dr. Lai said the study is seeking “biomarkers” that may predict the onset of Alzheimer’s disease and enable researchers to learn more about Down syndrome. It is intended to be “the most comprehensive study of the links between Down syndrome and Alzheimer’s disease up to this point.”

Lai and her colleagues, Dr. Diana Rosas, a neurologist, and Dr. Margaret Pulsifer, a psychologist, are in charge of the Massachusetts portion of the study.

While the average person with Down syndrome develops symptoms of Alzheimer’s disease in their early 50’s, some may not develop the dementia until the age of 70, and a very few escape it altogether.

“The study seeks, among other things, to learn the reasons for that variation,” Dr. Lai said.

The Massachusetts General Hospital’s facility at the Charlestown Navy Yard is one of seven sites around the country and England that are coordinating their research efforts as part of the study. The other sites include Columbia University (New York City), the University of California Irvine, the University of Pittsburgh, Cambridge University (UK), the University of Arizona (Phoenix), and the University of Wisconsin (Madison).

The NIH study represents a natural progression in Dr. Lai’s clinical practice and research. Over several decades, she has evaluated and followed some 750 individuals with Down syndrome, including Joanna Bezubka, a cousin of COFAR Board member and former president, George Mavridis. In 2013, Mavridis published a compelling memoir about his experience in caring for Joanna, who died of Alzheimer’s disease in 2012 at the age of 60.

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George Mavridis and Joanna Bezubka on Joanna’s 60th birthday. Joanna, who had Down Syndrome, died in 2012 at the age of 60 of Alzheimer’s Disease. She had been one of Dr. Lai’s clinical patients.

In a recent letter to Mavridis, Lai said that her hunch that women with Down syndrome who developed menopause early were more likely to develop Alzheimer’s disease earlier, led to an earlier multi-year NIH study by a colleague who proved the hypothesis.

Another hunch of hers that immunological factors in Down syndrome might be involved in Alzheimer’s disease is now the subject of intense scientific interest with many researchers concentrating on neuro-inflammation as a causative factor.

Those avenues of inquiry “may pave the way to think outside the box for potential treatments for AD (Alzheimer’s disease),” Lai wrote to Mavridis.

In her interview with COFAR, Dr. Lai said scientists have discovered that people with Down syndrome are genetically predisposed to create large concentrations in their brains of amyloid protein, which is connected with destruction of brain cells in Alzheimer’s disease.

The gene for the precursor of amyloid protein is located on Chromosome 21. Since people with Down syndrome have an extra copy of Chromosome 21, Dr. Lai explained, they “make the amyloid earlier and more of it. That may be the reason for the high incidence of Alzheimer’s disease in people with Down syndrome.”

In order to learn more about the impact of the amyloid protein and other potential biomarkers of Alzheimer disease, the NIH study is designed to collect a broad range of information from the participants in the study, including information on their health history, cognitive functioning, immune and genetic factors, and daily living activities. The information is obtained from cognitive testing, from blood samples that are sent to specialized labs around the country, and from caregivers of the participants.

The study also includes an MRI brain scan of the subjects and an optional PET scan (Positron Emission Tomography), which involves the introduction of a small dose of radioactive material to examine the presence of amyloid protein in the brain. Another optional part of the study includes analyzing the cerebral spinal fluid obtained from a spinal tap.

The 3-year NIH study is limited to adults over the age of 40 with Down Syndrome at three of the sites (including Charlestown) and over age 25 at the other four  sites.  At the MGH Charlestown site, the study involves three cycles of visits  with each cycle involving two to three visits of up to five hours each. The second and third cycles each take place 16 months after the previous cycle.

Although the study was initially funded in September 2015, it took about a year to “harmonize the procedures at all the sites,” Dr. Lai said, and to receive the necessary approvals from the participating institutions including the Research Review Committee of the Department of Developmental Services in the case of Massachusetts. Lai said the researchers at the seven study sites hope to recruit up to 700 individuals to participate in the study.

Lai said that although the NIH authorized the multi-million dollar study in 2015, the federal agency recently announced that it will be forced to cut some of the funding.  She noted that the study is expensive to perform.  A large number of specialized personnel is needed, and doing the brain scans is “very costly.”

At the MGH site, about 20 participants have been recruited so far and have been through a preliminary visit, Lai said. They receive a modest payment for their participation.  The information collected is anonymous, she said. Even the researchers analyze only coded, aggregate data.

Continuing to treat Down Syndrome patients

Apart from the NIH study, Drs. Lai and Rosas continue to clinically treat, test, and follow the life histories of patients with Down syndrome at McLean hospital. They see each patient once a year and generate neurological evaluations which are shared with caregivers and family.

Lai has collected hundreds of blood samples, some of which have been stored at a Harvard-affiliated  facility at -80 degrees C. However, the samples have lain dormant for many years due to a lack of funding needed to analyze them. Lai noted that many of her colleagues have experienced the same funding frustrations, and have had to supplement federal funding with industry grants and philanthropic donations.

It was actually due to the generosity of several families of her patients, Lai said, that she herself was able to start a Down Syndrome Fund for Alzheimer Research at MGH. The Fund got a boost of several thousand dollars a few years ago when a member of the MGH Board of Directors called Lai to thank her for her care of a patient with Down syndrome whom he knew personally.

Lai said that if the Down Syndrome Fund ever does get more sizeable contributions, her “dream” is to team up with colleagues to fully analyze the stored blood samples, and “to encourage a younger generation of clinicians and investigators to devote their energies to care for and study  those with Down syndrome.”

Persons interested in learning more about the NIH study at MGH can call 617-726-9045 or 617-724-2227.

Those interested in an evaluation and follow-up with Drs. Lai and Rosas at the McLean Hospital Aging and Developmental Disabilities Clinic can call 617-855-2354.

Dental practitioner bills could undercut care of the developmentally disabled

February 27, 2017 Leave a comment

Sometimes even well-intentioned bills in the Legislature can have unintended impacts, and we’re concerned about two such bills that authorize mid-level dental practitioners to perform basic dental procedures in order to address under-served populations around the state.

Versions of one of the bills are being promoted in several states, including Massachusetts, by the Pew Charitable Trusts. The second bill is being promoted by the Massachusetts Dental Society.

While we appreciate the intent behind the bills, we are concerned that passage of either one as currently written could actually result in the loss of existing services to clients of the Department of Developmental Services.

If either bill is enacted, many DDS clients, who are currently served by experienced dentists, could be switched by the administration to less skilled and experienced practitioners as a money-saving measure.

Backers of the Pew Trusts bill (S. 1169) point out that large numbers of adults and children in this and other states around the country are unable to access dental care either because they live in under-served areas or because only about a third of U.S. dentists accept publicly provided health insurance.

Under S. 1169, practitioners known as “dental therapists” would work under supervisory agreements with dentists, and would be authorized to do such things as fill cavities, extract teeth, and apply crowns. While this may work well for patients in the general population, we don’t think it is workable for many people with developmental disabilities who require dentists with advanced skills and significant experience.

As such, we would not support either S. 1169 or the competing bill from the Massachusetts Dental Society (S. 142) unless either bill contained language specifying that dentists must continue to treat persons with developmental disabilities.

The primary sponsors of S. 1169, Senator Harriette Chandler and Representative Smitty Pignatelli, maintain that hundreds of thousands of children covered by Masshealth in Massachusetts do not regularly see a dentist.

However, it has apparently not been as difficult to find a dentist for people with intellectual and developmental disabilities (ID/DD). Right now, the availability of dental services to persons with ID/DD appears to be quite high in Massachusetts. The Massachusetts Developmental Disabilities Council’s (MDDC) State Plan for Fiscal 2017 states that between 90% and 97% of DDS clients have continued to receive annual dental exams.

Some 7,000 developmentally disabled persons in Massachusetts receive dental care in seven state-funded clinics run by the Tufts University School of Dental Medicine. Pediatric dentistry is offered by Franciscan Hospital for Children.

Despite that high level of service provision, we have seen in the past that administrations have proposed elimination of some of the Tufts clinics in order to save money. Strong opposition from families of DDS clients helped to preserve at least one such clinic temporarily at the now closed Fernald Developmental Center, but that clinic was ultimately closed.

Our concern is that as currently written, either S. 1169 or S. 142 might actually give the Baker administration an excuse to reduce funding for the Tufts clinics because those clients could now presumably be served by the dental therapists or hygienists, as authorized by the legislation.  If that is the case, there could be an increasing impetus to close additional Tufts facilities for those clients.

Moreover, while S. 1169 requires that the dental therapists receive training in treating people with ID/DD, the therapists would certainly not have the expertise or experience of the dentists in the Tufts clinics. The bill actually doesn’t specify the amount of training the dental therapists would be required to receive.

The Tufts Dental school declined to comment on either bill. Dentists themselves in Massachusetts oppose S. 1169, arguing that it does not provide for sufficient training of the dental therapists or direct supervision of them in all cases. The dentists also fear the use of dental therapists could lead to reduced reimbursement rates from insurance companies.

The Dental Society’s bill (S. 142) would establish more stringent educational and supervisory requirements regarding mid-level practitioners than does S. 1169. The Dental Society bill would require, for instance, that mid-level practitioners, which S. 142 refers to as public health dental practitioners, be under the direct, on-site supervision of a dentist at all times.

If either bill does pass, we would urge that language be added to prohibit the dental therapists or public health dental practitioners from having authorization to treat people with ID/DD unless an individual’s guardian specifically requested it.

We think that language along those lines would potentially protect existing dental services for people with ID/DD. Allowing guardians to request the therapists or public health dental practitioners would keep those options open if full dental services were not available for a developmentally disabled individual.

We emailed a Pew Charitable Trusts dental campaign officer on February 17 to express our concerns about the S. 1169, but have not as yet received a response from him.

Last week, I also contacted a legislative aide to Senator Chandler, who defended S. 1169, contending that it would would not result in reduced services to persons with ID/DD, but would “strengthen Tufts” and allow them to provide the same services at a “slightly lower cost.”

The aide said he would convey our concerns to Senator Chandler and would try to arrange for someone from Pew to get back to us with their response to our concerns. As noted, that hasn’t happened yet.

No one from Rep. Pignatelli’s office has yet responded to an email we sent early last week.

S. 1169, which currently has 30 co-sponsors from the House and Senate, has been referred to the Legislature’s Public Health Committee. Please call the Committee at (617) 722-1206 and urge them to insert language into the legislation to prevent dental therapists from treating people with developmental disabilities unless a guardian requests that. Or you can email the co-chairs of the Committee — Senator Jason Lewis ( Jason.Lewis@masenate.gov) and Representative Kate Hogan (Kate.Hogan@mahouse.gov).

The Massachusetts Dental Society’s bill (S. 142) has been referred to the Consumer Protection and Professional Licensure Committee. That bill should also be amended to include our protective language.  Please call that Committee at(617) 722-1612.  Or you can email the co-chairs — Senator Barbara L’Italien (barbara.l’italien@masenate.gov) and Representative Jennifer Benson (Jennifer.Benson@mahouse.gov).

DDS providers pushing Gov. Baker to phase out state-run care

February 13, 2017 2 comments

The major lobbying organizations for corporate providers to the Department of Developmental Services appear to be pushing the Baker administration and the Legislature to privatize more and more state-run care.

And the administration and Legislature have so far appeared to be more than willing to accommodate the providers.

Governor Baker’s Fiscal Year 2018 budget, which he submitted to the Legislature last month, further widens a spending gap between privatized and state-run programs within the Department of Developmental Services. In doing so, it appears largely to satisfy budget requests from both the Arc of Massachusetts and the Association of Developmental Disabilities Providers (ADDP).

In fact, the increase proposed by the governor in funding for privatized group homes is $26 million more than the $20.7 million increase the Arc had sought. The ADDP may be a little disappointed only because that organization had asked for a $176 million increase in that account!

The chart below shows the widening gap in funding for key privatized and state-run DDS services over the past several years, adjusted for inflation. Under this trend, funding for corporate-run, residential group homes, in particular, has risen steeply while funding for state-operated group homes and developmental centers continues to be stagnant or cut.

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For Fiscal 2018, the Arc requested a $20.7 million increase in funding for privatized group homes (line item 5920-2000), and the governor obliged with an even higher $59.9 million, or 5.4 percent, increase, as noted.*  The ADDP, as noted, wanted a $176 million increase in that line item.

In the privatized community day line item (5920-2025, not shown on the chart), both the Arc and ADDP asked for a $40.2 million increase, and the governor responded with a proposed $13.6 million increase.

At the same time, both the Arc budget request for Fiscal 2018 and the  ADDP request effectively asked for zero increases in funding for the state-run DDS accounts. Those include accounts funding state-operated group homes, developmental centers, and departmental service coordinators. (The column labeled “Request” in the linked Arc budget document is left blank for those state-run program line items. The ADDP budget request simply doesn’t include those line items.)

The governor appears to have more than obliged the provider organizations regarding those state-run accounts as well. His Fiscal 2018 budget proposes a $1.8 million cut in the state-operated group home account (5920-2010). This amounts to a $6.9 million cut when adjusted for inflation.

In addition, the governor is proposing a  $2.4 million, or 2.2%, cut in the state-run developmental centers line item. (5930-1000). That’s a $4.9 million cut when adjusted for inflation.

And the governor is proposing a cut of $96,000 in the DDS administration account (5911-1003). That is a $1.7 million cut when adjusted for inflation, and means a likely cut in funding for critically important DDS service coordinators, whose salaries are funded under the administrative account.

It’s well known that the Arc and the ADDP oppose developmental centers because those two organizations oppose congregate care for the developmentally disabled and support only care in group homes or smaller settings. What may not be as well known is that the Arc and ADDP appear to have no interest in more funding for service coordinators or state-run group homes, in particular.

Late last month, Baker submitted his proposed Fiscal 2018 budget to the Legislature’s House Ways and Means Committee. In a letter to Representative Brian Dempsey, the chair of the budget panel, COFAR requested that, at the very least, the committee approve a plan to redirect some of the governor’s proposed increase in the corporate residential account to the state-operated group home, facilities, and service coordinator accounts.

(We would note that we have been urging this kind of redirection of funding for the past two years, and neither the governor’s office nor the Legislature are listening.)

Service coordinators

Service coordinators are DDS employees who help ensure that clients throughout the DDS system receive the services to which they are entitled under their care plans. In recent years, funding for service coordinator salaries has failed to keep up with their growing caseloads.

A reason for the Arc’s apparent disinterest in service coordinators may be that the organization has long promoted privatized “support brokers,” in which the Arc is financially invested.

The job descriptions of the Arc support brokers and the DDS service coordinators appear to be quite similar. The Arc notes on its website that “consumers or families hire a support broker to help them find appropriate services and supports to thrive in their community.”

The job description of DDS service coordinators states that they are responsible for  “arranging and organizing DDS-funded and generic support services in response to individual’s needs.”

COFAR Executive Director Colleen M. Lutkevich terms the DDS service coordinators “the eyes and ears that make sure that the providers who report to DDS are doing their best for the residents in a large, confusing system. Without them, the provider agencies have total control, and families do not even have a phone number or a name to call outside the provider they are dealing with.”

Underfunding of state-operated group homes

In addition to provider-run group homes, DDS maintains a network of state-run group homes that are staffed by departmental employees. State workers receive better training on average than do workers in corporate provider-run residences, and have lower turnover and higher pay and benefits.

State-operated group homes provide a critically important alternative to the largely privatized residential care system that DDS oversees. But we have found that DDS routinely fails to offer state-operated homes as an option for people waiting for residential care, and instead directs those people only to openings in the privatized residences.

To be clear, we do not object to a highlight of Governor Baker’s budget — his proposed $16.7 million increase in the  DDS Turning 22 account, which would amount to a 222% increase in that account over the current year appropriation.  Turning 22 funds services for a growing number of developmentally disabled persons who leave special education programs at the age of 22 and become eligible for adult services from DDS. This account has been historically underfunded.

But our concern is that as they enter the DDS system, those 22-year-olds will be placed almost exclusively in privatized programs. An important choice is being taken away from them and their families.

As we noted in our letter to the House Ways and Means chair, the pattern of privatization in Massachusetts state government has become almost permanently established even though the benefits of privatization are highly debatable.  Many questions have been raised about the privatization of prisons  and the privatization of education in Massachusetts and elsewhere around the country.

The privatization of human services may be the biggest prize of all for government-funded contractors.  We need to preserve what’s left of state-run services.

(*The $59.9 million figure for the governor’s proposed increase in the corporate provider line item is based on numbers provided by the nonpartisan Massachusetts Budget and Policy Center. The Arc’s budget document claims the governor’s requested increase was $46.7 million.)

Disability Law Center aids woman who has been kept away from father and sister by DDS

January 30, 2017 1 comment

In the wake of reports that an intellectually disabled woman has been prohibited for more than a year by the Department of Developmental Services from having any contact with her father and sister, a federally funded legal assistance agency has arranged for legal representation to help the woman challenge the ban.

The Boston-based Disability Law Center opened an investigation late last year of a decision by a DDS-paid guardian to prohibit contact between the woman and her father, David Barr, and sister, Ashley Barr. Based on privacy concerns raised by the DLC, we are no longer publishing the woman’s name.

Earlier this month, a DLC attorney said the agency had assisted in making an attorney available at no charge to the woman to challenge the visitation ban in probate court, if she chooses to do so. The attorney said he was precluded by confidentiality requirements from discussing the investigation or any conclusions he may have reached in the case.

Since Thanksgiving of 2015, David and Ashley Barr have had no information about the woman’s whereabouts. She is believed to be living in a DDS-funded group home, but the Barrs have no idea where that residence might be located.

COFAR has reported that a DDS guardian imposed the ban on all contact with the woman by David and Ashley primarily because they were viewed as too emotional when they were allowed to visit her. Neither David nor Ashley Barr have been charged or implicated in any crimes, yet they said they feel they have been treated by DDS as if they are criminals.

In COFAR’s view, restricting family members from visiting a loved one impinges on a fundamental human right, and the DDS guardian should at least have obtained a probate court order before doing so. DDS should also have made sure the woman had access to legal counsel who could challenge the visitation ban on her behalf. DDS reportedly did neither of those things.

The case appears to involve a clear violation of DDS regulations, which state that people in the Department’s care have the right …“to be visited and to visit others under circumstances that are conducive to friendships and relationships…” (115 CMR 5.04)

The right to visitation is, moreover, a key aspect of family integrity in international human rights law. As an article in the Berkeley Journal of International Law states, “Sufficient consensus exists against particular types of family separation…to constitute customary international law.”

The article discusses Nicholson v. Williams, a class action lawsuit by a group of mothers against the New York City Administration for Child Services (ACS). The lawsuit “challenged ACS’s policy of automatically removing children from homes where domestic violence had occurred even if it meant removing them from the victims rather than the perpetrators of that violence.”

The children of the plaintiffs in Nicholson were kept in foster care for several weeks. According to the law journal, the court “cited the emotional and developmental damage done to the children, (and) the destruction of their family relationships…” that occurred as a result of the separation of the children from their parents (my emphasis).

We would note that the ACS lawsuit was a case involving the removal of children for just a few weeks. The Barr case involves the removal of a family member for more than a year so far, with no indication from DDS that family contact will ever be restored.

While the developmentally disabled woman in Barr case is no longer a child, she has been found to be mentally incapacitated and in need of a guardian. As such, she is in a similar legal position to a child in that she is not considered competent to manage her personal or financial affairs.

The court in Nicholson v. Williams cited specific international provisions including the Universal Declaration of Human Rights, and found that the New York ACS policy “violated the basic human rights of family integrity and freedom from arbitrary interference with family life, as well as the specific right of a child to be cared for by her parents.”

In what seems almost an obvious observation, but one that doesn’t seem to have occurred to DDS, the Berkeley law journal article notes:

People simply care a great deal about their families, and often suffer more from losing them than they do even from serious individual harms they suffer personally.

A couple of other points made in the law journal article are worth highlighting. One is a statement that temporary removal of children from families may cause “lasting harm to the children…especially if frequent visitation is not allowed during the removal period.”

The article also points out that the International Convention on the Rights of the Child (ICRC) imposes obligations on states in situations where families have already been separated. In particular, the ICRC states that where children are separated from one or both parents “the state must furnish the parents or children with any available information regarding their family members’ whereabouts” (my emphasis).

The Massachusetts Supreme Judicial Court weighed in last spring with a decision upholding the right of the grandfather of a developmentally disabled woman to challenge severe restrictions placed on his right to visit her.

As we’ve said before, and will again, major reforms are needed in the state’s probate court system in order to ensure the rights of families to maintain contact with their loved ones in DDS care. One of the first steps is for the Legislature to finally pass a bill (filed in the current session as HD 101) that would require probate judges to presume parents to be suitable guardians for persons with developmental disabilities.

DDS commissioner paints overly rosy picture of employment for developmentally disabled

January 19, 2017 2 comments

In opening remarks at a conference on employment opportunities for the developmentally disabled late last year, Department of Developmental Services Commissioner Elin Howe gave what appears to be an overly rosy assessment of the likelihood of mainstream jobs for those people.

In her written remarks delivered to the November 30 conference, which was hosted by DDS and the UMass Institute for Community Inclusion, Howe appeared to imply that former participants in sheltered workshops, which the administration has worked to close, have been placed in mainstream jobs at a record rate.

“There are now more people working in individual jobs in the community than ever before,” Howe stated.

But while the numbers Howe cited show an increase in the number of people placed in mainstream jobs since 2013, it appears that most of that increase occurred between 2013 and 2014, before the workshop closures took place. Since 2014, DDS data indicates that the number of people finding mainstream jobs declined rapidly.

Howe noted that all remaining sheltered workshops in the state were closed as of last July 1, and that Massachusetts was only the fourth state in the nation to do that. But the loss of those workshops should not be a cause for concern, Howe contended, because, there were now more than 3,300 individuals working in “group supported employment” in the state – an increase of over 1,300 people since June 2013.

An increase of 1,300 disabled people in group supported employment would work out to a 65 percent increase in the number of people in that category since 2013, which sounds like a major success story.

But of that total increase cited by Howe of 1,300 individuals, 998 — or nearly 77 percent of them — appear to have entered group supported employment between 2013 and 2014, according to data provided by DDS.

The DDS numbers show there was an increase of only 146 people in group supported employment between August 2014 and August 2015.  Between August 2015 and November 2016, when all remaining sheltered workshops were closed, there was an increase of only 156 people in group supported employment.

So, while the number of people in group supported employment appears to have increased by almost 50 percent between 2013 and 2014, the increase in the two-year period from 2014 to 2016 dropped to about 10 percent.

Group supported employment is defined by DDS as “a small group of individuals, (typically 2 to 8), working in the community under the supervision of a provider agency.” In contrast to sheltered workshops, supported employment places an “emphasis…on work in an integrated environment,” which means that developmentally disabled persons work in the same location as non-disabled individuals.

The closures of the sheltered workshops in Massachusetts has resulted in the removal from those programs of close to 2,000 participants since 2013; but those closures did not appear to have translated into a steady flow of people into supported employment. Even Howe appears to acknowledge that a significant percentage of those former workshop participants have not found mainstream workforce jobs.

In her remarks, Howe stated that “many people transitioned (from sheltered workshops) to Community Based Day Support programs,” but didn’t say how many. Day programs are often really just daycare programs that do not offer work-based or skill-building activities to the people in them.

The Massachusetts Developmental Disabilities Council, which is part of the Baker administration, appears to acknowledge the problem of employment in its State Plan for 2016, noting that:

there are fewer people being placed in successful employment due to staff layoffs and the current fiscal environment. In order for more services to be made available, it is important to create partnerships and work with various state agencies in order to address this significant issue that is and will continue to be of concern. (my emphasis)

Last year, however, the Legislature failed to provide funding sought by Governor Baker for the transition from workshops to supported employment.

Rather than touting the supposed good news about the closures of the workshops, Howe should have acknowledged ongoing concerns about the apparent difficulty of finding mainstream work for people with developmental disabilities.

Opaque Massachusetts budget process hides state’s real priorities

January 13, 2017 Leave a comment

In a preview this week of the Fiscal 2018 state budget, the Massachusetts Budget and Policy Center points out a key shortcoming in the budget process.

That process is not transparent, the nonpartisan think tank argues, because it doesn’t provide a needed context for the proposals and decisions that the governor and Legislature make.

As the Budget and Policy Center notes, that needed context lies in the release of a public “maintenance budget” that discloses the projected costs of continuing “current services” from one fiscal year to the next. Without that “maintenance budget” context, it is difficult, if not impossible, for the public to really know whether proposed funding levels are meeting real needs or falling short of them.

The problem can be clearly seen in the current-year funding of group homes operated by the Department of Developmental Services.

Last January, Governor Baker proposed a $3.7 million — or 1.7 percent — increase in the DDS state-operated group home line item. But while that sounds like more funding for those facilities, it was in actuality a cut when adjusted for inflation.  The inflation rate was 1.8 percent, according to the Policy Center’s numbers.

Moreover, the funding increase proposed by the governor for the state-operated group homes was reportedly about $500,000 less than what DDS wanted in order to maintain current services in the residences. That $500,000 figure, however, wasn’t readily available to the public. The figure was casually mentioned by DDS Commissioner Elin Howe during a conference call on the budget last year with advocates for the developmentally disabled.

At the same time, Howe didn’t intend to do anything about that actual shortfall in funding for the state-operated group homes.  As we noted last May, while Howe admitted the funding proposed by the governor for the group homes was inadequate, she also said DDS did not intend to seek an amendment in the House budget to increase that funding. Howe’s response to us was, “we’re just going to have to manage it.”

This is exactly why the maintenance budget disclosure is needed as part of the process. It would give the public a better insight into what the governor and Legislature actually intend with their budget proposals and deliberations.

It appears to us that the DDS mindset is that it is not worthwhile to push even for maintenance-level funding for the state-operated group homes and potentially other state-run programs. That’s because the Department’s ultimate priority or aim, as we see it, is to privatize these services.

Interestingly, the Budget and Policy Center also pointed out that certain other budgetary accounts were underfunded in the current fiscal year, including a human services account that helps fund corporate provider-run or privatized group homes in the DDS system. That account was underfunded by $14.7 million. However, the administration apparently plans to fully fund those accounts next year, the Center noted.

Partly as a result of the unfunded accounts and the use of a host of one-time revenues and temporary solutions to balance the current-year budget, the Policy Center is projecting a $616 million budget shortfall in Fiscal 2018.

The Policy Center’s preview suggested that one of the major reasons for the Legislature’s underfunding of the privatized group home and other accounts was the lack of a publicly available maintenance budget document. The Policy Center points out that 19 other states publish a maintenance budget document, but Massachusetts is not among them.

The Policy Center is also calling for the public release of a baseline tax revenue growth estimate. This sounds like a suggestion that the administration adjust its usual revenue projections to take into account any tax cuts or tax increases that have been enacted.  As the Policy Center noted,

The initial tax revenue growth estimates for FY 2017 were unusually optimistic, but there was no easy way to see that because of the way the estimates were presented.

We concur with the Budget and Policy Center’s recommendations, particularly on the need for disclosure of a maintenance budget. The more information the public has with which to assess the budgetary process, the better off we are, and this appears to be a key piece of missing information.

Our January issue of The COFAR Voice is online

January 9, 2017 Leave a comment

Our January 2017 issue of The COFAR Voice newsletter is now online, with stories about:

  • The bleak outlook for the DDS budget for Fiscal 2018
  • How a family has been banned for more than a year from all contact with a young woman in the DDS system
  • Changes proposed by DDS in regulations on restraints and behavioral modification techniques that appear to make those rules more vague
  • Publication of a gritty and compelling book on the life of Donald Vitkus, a survivor of the former Belchertown State School. The book was written by Ed Orzechowski, a COFAR board member and president of the Advocacy Network.

and much more.

Our January issue is a recap of highlights and critical issues we faced in 2016. It was a year that culminated in our December 29 meeting with two key members of Governor Charlie Baker’s staff. The unusual (for us) meeting was arranged by Marty Corry, our long-time, pro bono lobbyist on Beacon Hill.

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COFAR’s December 29 meeting with key members of Governor Baker’s staff. From left are Kaitlyn Sprague, Baker’s legislative director; Ryan Coleman, Baker’s deputy chief secretary; Thomas J. Frain, COFAR Board president; Colleen M. Lutkevich, COFAR executive director; and David Kassel, COFAR communications director.

Prior to the meeting, Marty arranged a conference call in which we discussed how we would boil down the many issues we wanted to discuss into a format that could be absorbed in the half hour to 45 minutes that we expected we would have. In the end,  Kaitlyn Sprague, Baker’s legislative director, and Ryan Coleman, Baker’s deputy chief secretary, talked with us for over an hour.

Our theme for the meeting was an emphasis on the rights of individuals with developmental disabilities and their families and guardians to the fullest possible choice in care and services. We focused on three areas of concern:

  • Protecting and preserving the state-run line items in the DDS budget, particularly Line Item 5920-2010 (the state-operated group homes) and Line Item 5930-1000 (the developmental centers)
  • Ensuring that DDS disclose state-run care as an option to people seeking services, as required by federal law.  (The Home and Community Based waiver of the Medicaid Law [42 U.S.C., Section 1396] requires that intellectually disabled individuals and their guardians be informed of the available “feasible alternatives”  for care.
  • Achieving the passage of H. 1459, which proposes that a spouse or parent be presumed in probate court to be the proper person to be a guardian of a developmentally disabled or otherwise incapacitated person unless competent evidence is introduced to the contrary.

We consider H. 1459 to be a critically important rights measure for family members of people with disabilities — particularly developmental disabilities. We have found that families are routinely overruled in decisions about the care of their loved ones in probate court proceedings by medical and clinical “experts,” DDS, probate court judges, and service providers. Yet, this bill, which has no known source of opposition, dies every year in the legislative process.

Enactment of this legislation could prevent tragic situations such as the ongoing case of the Barr family in which the father and sister of Chelsea Barr, an intellectually disabled woman, have been prevented by a DDS-paid guardian from all contact with Chelsea for more than a year.

Our January newsletter touches on all of these issues. We hope you will check it out. It’s coverage you will find nowhere else.