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Mother briefly contacts missing autistic son in Texas

May 21, 2017 1 comment

A man with autism and mental illness, who left a group home unsupervised in Massachusetts early Wednesday morning, was believed to be in Brownsville, Texas, as of Saturday, his mother said.

But Kris Myerson said she believes her 30-year-old son may be experiencing psychotic symptoms and may be with people who might do him harm.

Myerson said her son texted her from a cell phone on Saturday and asked her for money. The phone text was traced by police to Brownsville. But when Myerson tried to get her son to describe where he was, he disappeared again, she said.

[Update: On Sunday afternoon, Myerson’s son texted her that he was on a bus to Los Angeles. She said he asked her to find a place for him to live when he arrived there. Myerson lives in Vermont.]

Myerson believes officials with the Department of Mental Health and with ServiceNet, the provider of his Hadley, MA-based group home, allowed her son to leave Massachusetts and travel to Texas. She considers those officials responsible for any harm that might come to her son whom she believes does not have the functional capacity to travel by himself.

Myerson said ServiceNet staff told police that her son left the group home early Wednesday morning wearing only shorts and a T-shirt.

It is not clear how Myerson’s son got to Texas from his group home in Massachusetts. Myerson believes he removed Social Security funds from his bank account with help from ServiceNet staff. She believes the staff also helped him purchase a cell phone.

Myerson thinks her son may have taken a bus to Texas. She said that the ServiceNet staff reported that a cab had arrived at her son’s group home at noon on Wednesday to take her son to an airport, but that he had actually left the house, unseen, earlier that morning.

Myerson said her son texted her on Saturday from what she surmised was a bus station in Brownsville.  She said he texted that “he wanted to go to California right away and seemed desperate to get out of Brownsville and very scared.” However, Myerson added that, “he could not even go to the ticket counter to buy a ticket and wanted ME to do that somehow from Massachusetts!!!”

DMH and Department of Developmental Services officials have told Myerson that they cannot interfere with the man’s travel or travel plans because he is an adult and had been found competent to make his own decisions.  But Myerson doesn’t believe that either department has evaluated his functional capacity. She noted that he was considered disabled enough to require services in a group home with 24-hour care following a year-long hospitalization at the Worcester Recovery Center.

Myerson said her son was recently hospitalized for an eating disorder and emaciation. He has an extremely low body mass index, considered by eating disorder specialists to be serious enough to need hospital-level care. She said he is not able to count change, does not know the months of the year, and “is not able to safely navigate out in the community.”  He often rides his bike on the sidewalk and in front of cars, she said.

Last month, the State Department denied a passport to Myerson’s son, based on an incomplete application. He had sought the passport in order to travel to Cancun, Mexico, to visit unknown persons there whom he had met while playing an online video game.

Man with autism and mental illness missing after having been allowed to leave group home with airline ticket to Texas

May 18, 2017 1 comment

A man with both autism and mental illness, who was denied a passport last month to travel to Mexico, is apparently missing after he was allowed to leave his group home Tuesday night. He had reportedly purchased an airline ticket to Texas.

Kris Myerson, the mother of the 30-year-old man, Kaleb Light-Gaudinier, has put up missing posters and contacted the police in Hadley where her son’s group home is located. The group home is run by ServiceNet, a Department of Mental Health provider.

Myerson, who has been at odds with DMH and the Department of Developmental Services over their supervision of her son, is worried that her son may be harmed because he lacks the capacity to function on his own. He receives services from both DMH and DDS.

Myerson said she considers both DMH and DDS and ServiceNet to be negligent in failing to keep her son from purchasing the airline ticket, apparently with his Social Security funds, and leaving the group home unsupervised. “They (DMH) have been reassuring us that they were prioritizing his safety,” Myerson said. “How is it safe to let a person on the autism spectrum and with severe mental illness get on a plane by himself to an unknown destination?”

Kaleb poster

A missing poster for Kaleb Light-Gaudinier, which has been posted by his mother

 

DMH and DDS officials have told Myerson that they cannot interfere with Light-Gaudinier’s travel plans because he is an adult and had been found competent to make his own decisions. It is not clear that either department has evaluated his functional capacity, although he is considered disabled enough to require services in a group home with 24-hour care.

The man had been on probation in connection with an incident a number of years ago in which he bit a police officer’s finger; but that probation period ended on Wednesday.  As of last month, he had been planning to travel to Cancun, Mexico, but the State Department denied him a passport for that trip.

Myerson had expressed strong concerns about her son’s planned trip to Mexico. He had said he planned to meet in Cancun with unknown persons he had met while playing an online video game.

Myerson said her son had also been talking about leaving his group home and traveling either to Texas, California, or Florida.  She said she now has no idea where her son is or whether he is safe.

Meanwhile, Myerson said she understands ServiceNet is continuing to hold her son’s room at his group home. She said she suspects the provider agency will charge him rent indefinitely out of his Social Security funds.

State Department denies passport for Mexico trip for developmentally disabled man

May 8, 2017 1 comment

The State Department has denied a passport to a developmentally disabled and mentally ill man who had been planning to travel alone to Cancun later this month to meet a person or persons whom he had met online while playing a video game.

Kris Myerson, the mother of the 30-year-old man, whose name we are withholding, said her family was informed in late April by the Department of Mental Health in an email that her son’s passport application had been denied.

The passport denial effectively prevents the man’s trip, which in his family’s opinion would have been unsafe for him to make alone due to his developmental disability and serious mental illness.

The DMH email, dated April 24, stated that the State Department had denied the man’s passport application “on the basis that additional information was required.”

The email added that it was reported to DMH that the man was no longer interested in pursuing the passport “as the requested information was going to be difficult to obtain.” The email did not indicate what the additional information was that the State Department was seeking.

Myerson’s son has both autism and schizophrenia and is a client of both DMH and the Department of Developmental Services. He currently resides in a group home operated by ServiceNet, a provider funded by DMH.

COFAR has reported that Myerson was afraid her son could have been harmed in Mexico. He weighs about 123 pounds and is 5′ 11” and is emaciated, she said. At the very least, she feared he would get lost there.

In the past eight months, Myerson said, her son has been hospitalized for overdosing on Advil and for self-starvation and dehydration while in ServiceNet’s care. He is also on probation for having bitten an officer’s finger a number of years ago while being taken in for a mental health evaluation; but that probation is scheduled to end next week, prior to his formerly planned trip to Mexico.

Myerson said she is relieved that her son will not be traveling to Mexico although she noted that her son’s planned trip was not cancelled due to any initiative of either DMH or DDS. She added that her son remains under the residential care of ServiceNet, which assisted him in applying for the passport.

Lately, Myerson said, the family has been assured by the DMH commissioner’s office that the department “will be prioritizing her son’s safety through the transition from probation and into the future.”

Myerson further stated that DMH officials recently told her and her family that the department was working with DDS to improve their assessment of clients with “co-morbid autism and serious mental illness.”  She said DMH is aware that such individuals are often not properly assessed by evaluators and staff who have not been trained in autism spectrum disorders.

Myerson applied in 2014 to be her son’s guardian, but was unsuccessful because her son reportedly contested her application and because DMH sided with her son and against her bid for guardianship.

She and her family continue to have serious concerns with DMH and DDS and their role in monitoring and properly assessing her son’s abilities and safety. A DDS official, in fact, told Myerson late last month that her son had been found competent to make his own decisions about travel.

In an April 21 email to Myerson’s daughter, a DDS official stated that it was his understanding that Myerson’s son “has been evaluated several times in recent years and found to be a person who is competent to make his own decisions.  As such,” the email stated, “(Myerson’s son) has the right to decide such things as where he will live, where he will travel, etc. DDS is not an agency that can restrict a competent person’s choices in these areas.”

Myerson’s daughter maintained, however, that DDS had not evaluated her brother’s functioning level. She said that as a former client of Vermont Developmental Disability Services, her brother had had a court-ordered guardianship assessment by a professional evaluator “and was judged to be in need of a guardian at that time, based on his very low scores.” That was before he was relocated to Massachusetts.

Myerson said that persons with autism often use “scripted dialogue” that they acquire from movies or even from therapists themselves. That ability to memorize that dialogue without really understanding it can make those individuals appear highly intelligent and insightful and can even fool mental health professionals who do not have deep knowledge of Asperger’s and other autism-related conditions.

The use of such scripted dialogue is one means by which some persons with autism attempt to hide their condition from others — a process sometimes referred to as “camouflaging.”

Myerson noted that her son “has many ‘savant’ skills” such as high-level vocabulary and “echoic memory with ability to absorb and spew back large tracts of dialogue gleaned from movies, youtube videos, etc.” Yet, those skills, she said, do not represent her son’s functioning level or overall cognitive abilities.

Myerson said her son has a “borderline” IQ and cannot perform basic math skills such as division and multiplication, cannot write a paragraph, and has no danger awareness – a common characteristic of people with autism. She said he has gone to sleep with lit candles on his bed and has ridden his bike in front of cars when trying to cross streets.

A DMH official did not return a call last week from COFAR, seeking more information on the efforts reportedly being made by the department and DDS to improve its assessment of clients with co-morbid autism and mental illness.

A look at the struggles of two families to cope with closures of sheltered workshops in Massachusetts

May 1, 2017 4 comments

When Massachusetts closed its remaining sheltered workshops for people with developmental disabilities last summer, deeming the programs “segregated,” the impact of the closures on workshop participants Mark Garrity and Danny Morin was pretty much the same.

The two men continued to go every day to their respective facilities where their sheltered workshops had formerly been operated by providers funded by the Department of Developmental Services. But while the providers continued to manage the same facilities, each provider now began offering their clients traditional, DDS-funded day program activities instead.

Paid piecework and assembly work that had been given to Garrity and Morin to do in their sheltered workshops were taken away and replaced by day program activities that they couldn’t relate to. In each case, their provider agency managed to come up with a makeshift solution to the problem that allowed the men to continue doing work similar to what they had done before.

Patty and Mark Garrity photo

Patty Garrity and her brother, Mark Garrity

But in each case, the solutions were implemented despite a lack of clear, written standards or guidance from the federal and state governments on the type of work and activities that were now permitted for the men. Their family and guardians were confused as well, often having to rely on information passed along from program staff or family of other clients.

Even some providers acknowledge that the system functioned more smoothly for everyone when the providers were operating their programs as sheltered workshops. At that time, participating companies would ship materials to the providers, and everyone at the workshop sites would have work to do — usually simple assembly jobs or packaging or labeling tasks.

Now, those providers must either send their clients to companies that offer to provide “integrated” work for them, or must try to continue to provide some on-site work under unclear rules that sometimes result in work arrangements that are adopted verbally and on a case-by-case basis. Moreover, most of their clients are now offered only day program activities that do not involve productive work and do not pay anything.

For Barbara Govoni, the mother of Danny Morin, and for Patty Garrity, the sister of Mark Garrity, the sheltered workshops were not only easier for them to deal with, they provided meaningful and satisfying activities for their respective loved ones.

“My argument is whether it was federal or state, they should not have taken away the workshops for those who can’t function in the community and disrupted their lives,” Govoni said. “I’m not opposed to finding jobs in the community or expanding day programs. I get it all has to do with money, but I feel that a group of people are being discriminated against based on the fact they had no voice or vote. They have been taken out of their element where they were comfortable.”

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Barbara Govoni and her son, Danny Morin

Govoni views the policy of providing integrated employment to all developmentally disabled people as a “misguided one-size-fits-all” approach to a complex social need.

State cites federal pressure to close workshops

All sheltered workshop programs were closed in Massachusetts as of last summer as a result of requirements by the federal Centers for Medicare and Medicaid Services (CMS) that developmentally disabled people work in “integrated employment” settings in which a majority of the workers are not disabled, and that they be paid the minimum wage in those settings. Sheltered workshops were deemed “segregated” settings because they were offered solely to groups of developmentally disabled persons, and the clients were often paid only a nominal amount for the work they did.

In Massachusetts, the Baker administration claimed it had no choice but to follow the CMS rules and close all of the workshops in the state, or else the federal government would bring a lawsuit against them.  But many other states have apparently not acted in the haste that Massachusetts did in shutting the programs down. DDS Commissioner Elin Howe stated late last year that Massachusetts was one of the first states in the country to close all of its workshops.

DDS and its major policy advisors, the Arc of Massachusetts and the Association of Developmental Disabilities Providers (ADDP), had actually wanted to close all of the sheltered workshops in Massachusetts as early as June of 2015. But in the wake of strong protests by families of workshop participants, the state Legislature temporarily slowed the closure process by inserting budget language in fiscal years 2014 and 2015, stating that DDS must continue to make sheltered workshops available for those clients who continued to want them.

But at the same time, the Legislature approved funding for the transfer of the participants out of the workshops and into day programs or employment programs. That move ultimately allowed the workshops to close while enabling legislators to claim they had acted to save the programs.

The closures of the sheltered workshops in Massachusetts resulted in the removal from those programs of close to 2,000 participants, but those closures do not appear to have translated into a steady flow of people into integrated employment.

Verbal permission given for on-site work

At the Road to Responsibility day program site in Braintree, which Mark Garrity attends, I met in late March with Patty Garrity and with senior staff of the provider and DDS officials to discuss Mark’s experience in making the transition from his sheltered workshop to the new system.

Like Barbara Govoni, Patty Garrity said the transition from the sheltered workshop has been difficult. Before RTR ceased operating as a sheltered workshop, Mark did a range of activities there, including collating, packaging, and other production work.

For months, after the workshop was closed in September of 2016, Mark was frustrated and angry, Patty said. RTR provided day program activities for him, but, as Patty put it, they “went over his head.” He wasn’t interested in nature walks or painting or cooking. In particular, he didn’t understand the class on money management.

In addition to his intellectual disability, Mark Garrity had suffered a traumatic brain injury in 1995 after having been hit by a car.  He underwent years of rehabilitation from that accident, which had nearly killed him.

In a letter written before Mark’s sheltered workshop program was ended, Mark’s neurologist, Dr. Douglas Katz, a member of the Department of Neurology at Boston Medical Center and a professor at the Boston University School of Medicine, stated that participating in the workshop had been “an important part of his (Mark’s) rehabilitation effort…and…his life before his injury. It is an activity that is highly rewarding for Mark. He looks forward to it on a daily basis.”

Katz added that, “I understand this program is …likely to close because of new rules passed by the CMS. I think this would be a big loss for my patient Mark. I would support efforts to maintain this structured workshop for Mark and others that benefit from this service.”

As of March 2 of this year, when I first talked to Patty, RTR still had no work for Mark to do that was similar to the work he had done prior to RTR’s changeover from a sheltered workshop to a day program site. But as of March 20, RTR officials said they had found paper shredding work for Mark for two out of the four hours a day that he attended the program.

The paper shredding arrangement at RTR was done after DDS southeast regional director Richard O’Meara determined that it would not violate the CMS rules. O’Meara said the permission he gave to RTR to offer paper shredding to Mark was purely verbal. There was nothing placed in writing about it.

Hearsay information on piecework eligibility requirement 

In January 2016, Govoni said, the Agawam-based Work Opportunity Center, her son’s former sheltered workshop provider, temporarily operated day programs in a function room in a local church after having closed its sheltered workshop program. “I walked in there one day (the temporary day program site),” she said, “and it appeared chaotic, with no structured activities.”

All of the Work Opportunity Center’s clients are now back at the agency’s facility. Govoni’s son gets sent out occasionally to integrated work sites and has some piecework to do at the Work Opportunity site as well. But the work is intermittent. She said she has also heard that those who want to do piecework at the Work Opportunity location will have to take a class explaining what piecework involves.

However, once again, Govoni said she has received nothing in writing about the reported class. She heard about it “through the grapevine.”

In the meantime, Govoni’s son receives a schedule of activities every month at the Work Opportunity Center.  “I’m not saying it’s bad,” Govoni said, “but it’s not what he is interested in.” She said many of the activities are educational, such as lectures on geography or cooking demonstrations. Volunteer work is available as well at a local homeless shelter, and residents are taken on walks to the local library and other locations. “Danny doesn’t want to do that,” she said. “He wants to work.”

Both Govoni and Patty Garrity said Danny and Mark respectively didn’t care about making the minimum wage, and would rather work at their day program sites than get sent out to jobs in the community.

Disagreement over client and family satisfaction

If, like Barbara Govoni and Patty Garrity, family members are confused or dissatisfied by the current situation, O’Meara said, they aren’t letting him know about it. O’Meara said that he and DDS Area Director Colleen Mulligan, who was also in attendance at the March 20 meeting at RTR, are generally the first people whom family members and guardians call when there are problems with DDS care.

“I haven’t gotten a lot of complaints (about the closures of the sheltered workshops in his region),” O’Meara said. “Generally, if people are not happy, we know about it.  These issues are addressed through the ISP (Individual Support Plans). I haven’t had many calls.”

Mulligan added that if problems were occurring like the ones Garrity has described, “I’m not hearing about it.”

But Garrity and some other advocates believe there may be few complaints now because the vocal protests that did occur when the workshop closures were first announced largely died down when families and guardians saw that their protests were having little effect.

A debate over integrated employment

At RTR, Chris White, the agency’s chief executive officer, maintained that even if the CMS requirements have been difficult to comply with, the requirements make sense because he believes that “everyone is capable” of working at integrated employment sites.

White’s viewpoint is in line with an August 2010 DDS policy document that states that “it has now been clearly demonstrated that individuals who were previously considered unemployable in integrated community settings can work successfully.”

But Govoni and Garrity maintained that the ideological viewpoint that the workshops segregated their participants and that integrated employment is feasible for everyone does not apply in their cases. “My son couldn’t wait to go to work (at his former sheltered workshop),” Govoni said. “He was not discriminated against. It was not a sweatshop for him, but the opposite. He doesn’t thrive in integrated sites. He would much prefer staying at the workshop where he was more comfortable. He doesn’t care what he gets paid.”

Govoni said that efforts to place her son in integrated work settings often did not work. In one case, she said, Danny was not able to do the work fast enough to satisfy the employer, and was terminated from the job. The speed of his work did not matter in the sheltered workshop.

Moreover, Govoni and Garrity maintained that even if integrated employment arrangements were feasible for everyone, there are not enough such jobs available to fulfill the demand now that the sheltered workshops are no longer available.

White said there were about 109 clients at RTR who were involved in “integrated group employment” at various job sites. That number was expected to rise this spring to about 120, he said.

At the same time, some 200 clients remained in RTR’s day program. White maintained, however, that those clients were happy with the activities they were doing, and that some were “on a retirement track.”

But it may be an open question whether all or most former workshop clients are really happy in day programs, or whether they simply have no choice but to remain in them.

Even DDS Commissioner Elin Howe appears to acknowledge that the state and its providers have been unable to find mainstream workforce jobs for a significant number of former workshop participants. While Howe made public remarks last year that we believe painted an overly rosy picture of the integrated employment situation, she did acknowledge that “many people transitioned (from sheltered workshops) to Community Based Day Support programs,” although she did not say how many.

Meanwhile, the Legislature has slowed funding for the transition to integrated employment. In order to carry out the administration’s integrated employment policy, the Legislature initially increased funding of the community-based day program line item in the state budget, and created a new line item to fund the transfers from the sheltered workshops.  The idea was to increase both day program and job development staffing and training.

The new sheltered workshop transfer budget line item was initially funded in Fiscal 2015 with $1 million.  That amount was raised to $3 million in Fiscal 2016, and the governor proposed to boost it to $7.6 million in Fiscal 2017.  But the House and the Senate did not go along with the governor’s plan. The Legislature level-funded the line item for Fiscal 2017. The line item was not included in the governor’s budget for Fiscal 2018.

We agree with Garrity and Govoni that the case has not been made that integrated employment is suitable for all people with developmental disabilities, and it is apparent that not enough integrated work opportunities even exist for all of those that could benefit from it.

We think the federal government needs to rethink its flawed ideology regarding sheltered workshops, particularly the questionable claim that they are discriminatory and segregate their participants.  The experience of Mark Garrity and Danny Morin provide further evidence that that claim is untrue.

Data show a recent decline in the developmentally disabled population in state-run residential care

March 27, 2017 Leave a comment

Data provided by the Baker administration show that the number of residents in remaining state-run residential programs for the developmentally disabled has begun to decline, raising questions about the state’s policy for the future of state-run services.

The data, which were provided under a Public Records Law request, indicate that the previous fiscal year (2016) may have been the peak year for the residential population in state-operated group homes and the Wrentham and Hogan developmental centers.

The graph below, which is based on the DDS data, shows the number of residents living in state-operated group homes each year since Fiscal Year 2008:

State-ops census graph

As we have frequently pointed out, the administration appears to have placed a priority on funding privatized residential services offered by corporate providers to the Department of Developmental Services. A question remains, however, as to whether the administration’s policy also entails phasing out state-operated care.

While Governor Baker’s Fiscal 2018 budget proposes $59.9 million in additional funding for privatized group homes, his budget proposes a $1.8 million cut in the state-operated group home account. That would amount to a $6.9 million cut in that account when adjusted for inflation.

Similarly, the governor is proposing a  $2.4 million cut in the state-run developmental centers line item. That’s a $4.9 million cut when adjusted for inflation.

DDS operates or manages both state-run and privatized systems of residential care in Massachusetts. The state-run system, which is now much smaller than the privatized system, includes the two remaining developmental centers and the state-operated group homes.

The ultimate elimination of state-run residential services would take away a key element of choice for individuals and families in the DDS system. State-run residential centers and group homes provide residential care to some of the most profoundly disabled persons in the commonwealth, and they tend to employ staff with higher levels of training and lower rates of turnover than do corporate-run facilities.

COFAR has sent a follow-up Public Records request to DDS, seeking any policy documents that concern the future of state-operated care in Massachusetts.

The administration of then Governor Deval Patrick began closing the remaining developmental centers in Massachusetts in Fiscal 2008, reducing the number of those federally overseen facilities from six to two. Most of the residents in the now-closed developmental centers were transferred either to the Wrentham center or to state-operated group homes, leading to an initial surge in the residential populations in those facilities. But those residential population numbers now appear to be dropping.

According to the DDS data, the number of residents in state-operated group homes rose from just over 1,000 in 2008, when four of the six developmental centers were targeted for closure, to roughly 1,150 in Fiscal 2016. As of the current fiscal year, that number had dropped to about 1,130.

As the graph below shows, both a population surge and drop-off have also occurred at the Wrentham Developmental Center since Fiscal 2008:

ICF census graph

The DDS data appear to provide further confirmation of COFAR’s contention that state-run residential facilities are not being offered as residential choices to persons waiting for residential care in the DDS system. We believe that if those facilities were routinely offered as choices, the number of residents in them would either continue to rise or remain steady,  but would not be declining.

If DDS is failing to offer state-run group homes and developmental centers as options to people waiting for residential care, that situation would appear to be in violation of federal laws, which require that all available services be offered as options.

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. In addition, the federal Rehabilitation Act (29 U.S.C.,  Section 794) states that no disabled person may be excluded or denied benefits from any program receiving federal funding.

We think the DDS data closely track the closures of the Fernald, Monson, and Glavin developmental centers, starting in Fiscal 2008, and the transfer of the residents of those facilities primarily to the state-operated group homes and the Wrentham center.

But as we reported in 2014, while 49 new state-operated group homes were built between 2008 and 2014, 28 state-operated homes were closed during that period. The new state-operated homes appear to have been intended to accommodate only the residents of the homes that were being closed and the residents transferred from the developmental centers.

Nevertheless, an undisclosed number of disabled individuals are reportedly waiting for residential services in Massachusetts, although the state does not maintain an official waiting list that would publicly identify the number of people waiting.  The Massachusetts Developmental Disabilities Council has continued to cite a 2010 survey indicating that some 600 people were waiting for residential services in the state, and up to 3,000 people were waiting for family support services.

As noted, the administration appears to be attempting to meet the demand for residential care by boosting funding to corporate residential providers. While that hasn’t prevented the budgets of state-run developmental centers from increasing, those budgets may be leveling off.

The DDS data, which includes information about the Wrentham and Hogan developmental center budgets, shows increases in those budgets between Fiscal 2008 and 2015. Wrentham’s budget, in particular, appears to have leveled off, starting in Fiscal 2015.

ICF budget graph

It is unclear if or when the administration intends to phase out state-run DDS residential care, but the initial data are cause for concern. If you have a loved one in a state-run facility or are seeking care in a state-run setting, please let your local legislators know about this situation.

You can find your legislators at this link.

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.

george-and-joanna-photo

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).