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House leadership rejects budget amendment to raise direct care wages
Despite support from well over a majority of the Massachusetts House of Representatives for a state budget amendment that would raise wages of direct care workers in the Department of Developmental Services (DDS) system, the amendment was rejected on Tuesday (April 26) by House leaders.
Debate concluded yesterday (April 27) in the House on a $49.7 billion state budget for Fiscal Year 2023, which begins on July 1. The budget legislation now goes to the Senate Ways and Means Committee.
Amendment 788 to the House budget bill would have required that 75% of funding in a reserve account for state payments to corporate human services providers go toward boosting wages for their direct care workers.
As COFAR has recently reported, low pay has become a recognized cause of staffing shortages in the state’s human services system. COFAR has called for a minimum wage for direct care workers in the DDS system of $25 per hour. Right now, the average hourly rate for these workers appears to be $16 or possibly even less.
In January, Governor Baker had proposed placing $230 million in the provider reserve account, an amount almost three times the size of the account’s current-year funding. Amendment 788 would have required that 75% of the account, or some $173 million, be used to boost direct care wages.
It isn’t clear to us how much the 75% funding requirement would have raised those wages. On Wednesday, I contacted the office of Representative John Mahoney, the chief sponsor of Amendment 788, for more information about the measure. I’m waiting to hear back from his office.
House leadership ignores legislative support
In the absence of current legislation to raise direct care wages to $25 per hour, we had urged support for Mahoney’s amendment. As of April 22, the amendment had garnered 44 co-sponsors. Three days later, that number had jumped to 107 co-sponsors out of the 160 member House. That is more than two thirds of the total House membership.
However, the budget process in Massachusetts does not generally allow for votes in the House on individual amendments. Instead, legislative leaders, including the House speaker and the chair of the House Ways and Means Committee, appear to make the decisions as to which amendments survive and which fail.
In a November 2021 paper, a working group of the Progressive Democrats of Massachusetts included the following statement from an observer of the legislative budget process in this state:
… during the House budget process, there are thousands of amendments. They’ll (legislative leaders) go into the backroom and then come back out with ten consolidated amendments and that’s all that’s on the record for a vote.
In other words, rank-and-file legislators are allowed to vote only on “consolidated amendments,” which are bundles of individually proposed amendments that have been deemed acceptable by the leadership. In this case, the language of Amendment 788 was not accepted into a consolidated amendment.
HHS secretary reportedly testified in support of 75% of funding for direct care wages
Despite the decision by the House leadership to scuttle Amendment 788, even state Health and Human Services Secretary Marylou Sudders reportedly implied her support for the idea of earmarking 75% of state funding to providers to be used for direct care wages.
At a March 7 legislative hearing, Sudders testified that, “it might be time for the state to consider mandating a percentage of rates paid to private providers be used for salary enhancements,” according to the State House News Service.
The News Service then quoted Sudders as saying, “Maybe we need to say 75 percent of our rates have to go to direct care salaries.”
On March 21, I sent an email query to EOHHS, asking whether Sudders was indeed supporting the idea. I also asked whether EOHHS had an estimate or projection of the amount to which such a requirement would raise direct care wages. To date, I haven’t received a reply to that query.
I also asked in that query whether Sudders would support legislation to require a minimum wage for direct care workers of $25 per hour.
Currently, the only legislation that appears to remain on Beacon Hill that addresses the issue of direct care wages is S.105. a bill that would require that the state provide funding to providers to close a “disparity” in wages between provider-based workers and state workers. That bill was filed more than a year ago and has remained since February in the Senate Ways and Means Committee.
As we noted recently, the intent behind S.105 appears to be good in that it would potentially boost the wages specifically of direct care workers in provider-run group homes and other facilities in the human services system. But the bill doesn’t specify either a minimum wage for those workers or the amount of the wage disparity that the bill sponsors are seeking to close.
COFAR also seeking higher funding for state-operated group homes and developmental centers
COFAR has also pushed during the current budget process for higher funding for DDS developmental centers and state-operated group homes.
The House budget bill approved yesterday contains the governor’s proposed 6.2% increase for the state-operated homes and 5.1% increase for the Wrentham and Hogan Developmental Centers. However, since January, inflation in New England has climbed to 7.4%, according to the Bureau of Labor Statistics inflation site.
As a result, the nominal dollar increases approved by the House in the state-operated group home and developmental center line items amount to cuts when adjusted for inflation.
There is a need for action to address pressing problems within the DDS system, particularly with regard to direct care wages and to preserving state-run residential services. Those services are critical to maintaining adequate care for some of the most vulnerable among us. Unfortunately, we’re up against a political system in Massachusetts that is not fully responsive to its constituents.
Mother protests state’s restrictions on son’s contact with church, and questions safety in his group home
Note to Readers:
Last week, we reported here about Valerie Loveland’s fight against efforts to limit her co-guardianship of her son and evict her from her apartment.
This week, we are updating the case of Cindy Alemesis, the mother of another client of the Department of Developmental Services (DDS). As we have previously reported, DDS is continuing an effort to remove Cindy as her son’s co-guardian even though Cindy acted to save her son’s life in 2018.
A hearing in Middlesex Probate Court on DDS’s guardianship removal petition against Cindy has been scheduled for May 5.
Cindy says that in addition to trying to remove her as her son’s co-guardian, the state is imposing unfair and punitive restrictions on her son’s contact with the community and with his church. She says the church, which she also attends, has been a “lifeline” for her 30-year-old son Nick.
Cindy also said she is concerned about Nick’s safety in a group home in Dracut in which he suffered an apparent head injury last month. The group home is operated by Incompass, Inc., a corporate provider funded by the state.
In seeking to remove Cindy as co-guardian of Nick, DDS appears to be trying to give sole guardianship to the other co-guardian who is paid by the Department. Cindy contends that co-guardian, who has other wards, has rarely visited Nick.
Nick and Cindy Alemesis
In 2018, Cindy appears to have saved her son’s life after she discovered he was ill following a church service. She insisted he be taken to a hospital, where doctors discovered that a shunt in his brain had been leaking fluid into his stomach. Nick spent 10 months in the hospital with sepsis, and underwent numerous brain operations and other procedures as a result.
The 2018 incident was not investigated by the Disabled Persons Protection Commission (DPPC) even though Zaheer Ahmed, Nick’s doctor, charged that staff in the group home failed to bring Nick to a scheduled ultrasound appointment. According to the doctor, that ultrasound would have revealed the fluid leaking from the shunt.
Dr. Ahmed recently wrote a letter to the probate court, supporting Cindy and opposing DDS’s attempt to remove her as Nick’s co-guardian.
Recently injured in group home
Cindy contends that care and safety problems have persisted in Nick’s group home, and said she thinks Nick may have been physically abused in the residence on or about March 18.
Cindy has been out of the country since March 14 on a church-sponsored missionary trip to Nigeria. While there, she received a call from her mother that Nick was bleeding from his ears in his group home, and had been taken by ambulance to a hospital. In addition, she said, his face was bruised.
Cindy said no one from the group home has responded to her questions about the incident, but that staff told her mother Nick’s injury was self-inflicted by banging his head against a wall.
Cindy said, however, that she has never witnessed Nick injure himself. She also said Nick is afraid of the group home, and has told her people are hurting him there.
No incident report apparently filed with DPPC
On Monday (April 4), Cindy called the DPPC to ask if a report was ever filed about Nick’s injury and hospitalization in March. She said the DPPC informed her on Wednesday that no report had been filed.
Under state law, the group home staff must report any case of suspected abuse or neglect to the DPPC.
Cindy said she called the DPPC hotline number this morning (April 7) to file a report herself with the agency about the March incident, but was told the wait time was 50 minutes due to a high volume of calls. She said she left a voicemail message asking for a callback, and planned to try to call again.
She was finally able to call in the report later on April 7.
According to a DPPC guidance document, even self-injurious incidents and unexpected hospital visits should be reported because they may indicate negligence of a caregiver or provider.
DDS Co-guardian writes letter restricting Nick’s visits to church; cites safety concerns
Rather than investigating or addressing conditions or care in Nick’s group home, Cindy said, DDS officials have moved instead to restrict her son’s contact with his church and community.
Following Nick’s injury in March, the DDS co-guardian wrote a letter to Cindy and the group home staff, which imposed a restriction on Nick’s attendance at his church in Londonderry in New Hampshire. The March 24 letter stated that,“Nick can go to church only if Cindy can take him and she provides supervision.”
The co-guardian’s letter also imposed restrictions on Nick’s contact with the community. The letter stated that, “Nick cannot go to church or access the community with (his) Uncle Danny or any friends from church due to issues of liability. They can visit him at the group home only. Incompass will find a local Baptist church where staff can supervise him.”
Given that Cindy has been out of the country, she said Nick has been unable for the past month to visit his church. She said she doesn’t understand why DDS would react to an injury to Nick that occurred in his group home by restricting his contact with his church and with the community.
For years, Cindy said, Nick has been taken to church services and functions from his group home either by family members or friends. Cindy herself doesn’t drive, and depends on those people for transportation to the church as well.
It is not clear what authority the DDS co-guardian has to restrict Nick’s church attendance. However, Nick’s DDS service coordinator texted Cindy on March 29, stating that the co-guardian’s “guidance” was “fair.”
Cindy said going to church is Nick’s principal social activity, and that his life revolves around church functions. He has been attending the church since he was five years old.
However, the DDS co-guardian’s letter stated that, “Nick presents a risk to the community, and is a risk to reoffend.” There was no explanation in the letter as to what type of risk Nick presents or what offenses Nick may have committed there.
In his March 29 text to Cindy, Nick’s DDS service coordinator stated that, “Nick is having an alarming increase in temper tantrums. He is exhibiting self-injurious behavior. He has a forensic history. There are concerns of him reoffending. There are issues of liability. He isn’t safe to go out into the community unsupervised. Period.”
Two incidents in 2014
Cindy said the references to Nick having a forensic history are apparently to two incidents that occurred in 2014. In one, she said, Nick “kissed a girl’s hand and wanted to walk her home. He knew her from school.” That same year, she said, “he urinated outside.”
Cindy said that in the wake of those incidents, Nick was found by the probate court to be incompetent, and Cindy agreed to become his co-guardian. He was never charged criminally. Cindy said Nick was first placed at that time in a group home. She said there have been no similar incidents since 2014.
Cindy said Nick has never been violent with others in the community, and has never had a forensic history, which implies criminal activity.
Cindy says no basis for restrictions on church and communty contact
In her March 24 letter, the DDS co-guardian stated that Nick “can go to lunch with mother or walks with father if conditions met.” Among those conditions are that, “There must be no temper tantrums, property damage, or incdents of self injurious behavior for 48 hours prior to event.” The co-guardian’s letter added, “Behaviors documented after interactions with family.”
Cindy maintained, however, that Nick has never had any problems with safety or injury in his church or in the community.
Pastor confirms he never saw Nick cause problems in church
The pastor of Nick’s and Cindy’s church, the Reverend Keith Phemister, confirmed Cindy’s assertion that Nick has never caused problems in his church.
“We’ve never had a problem with Nick,” Phemister said. “He’s never hit or hurt anyone here.” He said that a few months ago, Nick expressed anxiety at having to return to the group home. “He doesn’t like it there for some reason,” he said.
Phemister confirmed that as a result of the DDS co-guardan’s letter, Nick has not been able to attend the church for the past month. “I know he looks forward to coming to church,” he said. It’s his lifeline.”
On March 29, Cindy texted the service coordinator, saying, “ When I die, Nick will have no more church. … Why. Why take it away.”
The service coordinator texted back, saying, “Nick’s family and church friends can visit him anytime at the group home. I will not respond to anymore emails at this time.”
DDS not providing supported resasoning for its actions
In our view, DDS is attempting to remove Cindy as her son’s guardian, apparently without regard for the fact that she is the one person who has clearly acted in his interest in saving his life and advocating for his safety.
Nick does not appear to be safe in his group home and has expressed a fear about being there. He was injured there last month. Yet, the response by DDS officials has been to restrict his contact with his family members, his friends and his church, and the community as a whole.
Nick does not appear to pose any risk of harm to himself or others in his church or the community.
The DDS response does not appear to make sense. That’s may explain why the service coordinator doesn’t want to respond to further email inquries from Cindy.
Mother fighting both removal of her guardianship rights and eviction
The mother of a man with a developmental disability has found herself having to fight both an effort to limit her co-guardianship of her son and a move to evict her from her subsidized apartment.
For Valerie Loveland, whom we have written about before, this two-front battle is the latest chapter in her years-long struggle with a system that seems to be designed to override rather than uphold her and her son’s rights.
Valerie is co-guardian of her 24-year-old son who is non-verbal and needs 24-hour care. He has been a resident for the past six years in three separate group homes on Cape Cod run by the May Institute, a corporate provider funded by the Department of Developmental Services (DDS).
Valerie has asked that her son’s name not be published.
A motion to limit Valerie’s guardianship rights was filed in early March in Barnstable County Probate Court by her son’s other co-guardian – an attorney who is employed by DDS.
Valerie Loveland
This is one of a number of cases we have reported on in which DDS has sought, or is seeking, to limit guardianship rights of family members or remove their guardianships altogether. (See here, here, here, and here.)
Valerie said DDS had first attempted to remove her as her son’s guardian when he turned 18, but then agreed to the co-guardianship arrangement. The other co-guardian has other wards as well.
Valerie contends that the DDS co-guardian virtually always sides with the May Institute, which she says has failed to provide adequate care for her son. The co-guardian also opposes Valerie’s use of prescribed natural medicines for her son’s care.
Emails show the DDS co-guardian also objected last year when Valerie temporarily removed her son from a previous May Institute residence after he was allegedly sexually assaulted there. More recently, the co-guardian opposed a decision by Valerie to remove her son temporarily from his current residence after she said she was informed he had suffered a head injury there.
Eviction notice based on apparent technicality
The eviction proceedings were launched against Valerie in December by her landlord, Lake Street Limited Partnership, and its managing agent, The Community Builders, Inc., a nonprofit corporation. The eviction notice is based on what appears to be a technical violation of the lease for her Chatham apartment.
Valerie said she has never failed to pay her rent on time. The issue raised by the landlord in the eviction notice is that Valerie is a full-time college student. The notice states that as a full-time student, Valerie is in violation of a provision of her lease stating, among other things, that a household with a full-time student must also include a single parent with children.
Valerie said that after receiving the eviction notice, she emailed the attorney for the landlord, asking whether her son’s weekly visits home satisfied the lease provision. She said she received no response to her query.
A DDS official even wrote to a housing official involved in the management of Valerie’s apartment complex on March 2, confirming that Valerie’s son needs to have a room maintained for him in the apartment. That message from DDS, however, apparently has had no effect on the decision to evict her.
Both issues are coming to a head this month. A Southeast Housing Court mediation session has been scheduled for April 11 in the eviction case; and a hearing on the motion to limit Valerie’s guardianship rights has been scheduled for April 19 in Barnstable County Probate Court.
Son’s care has taken a financial toll
Valerie estimates that it cost her thousands of dollars in lost income while she cared her son at home last year and drove him each day to his day program in Mashpee.
She works in grocery delivery and part-time in aromatherapy, Reiki, and low-carb diet counseling, and is pursuing an online college degree in alternative medicine.
Valerie and her ex-husband were divorced in 2002. She said her ex-husband has been completely uninvolved in her son’s life and hasn’t seen him since her son was about two or three years old. Valerie cared for her son at home until he was 18. Her ex-husband owes her child support, she said, but has disappeared.
Valerie takes pride in her studies in alternative medicine. She is a sophomore in the online Bachelors in Alternative Medicine program at Everglades University of Boca Raton, FL. She is studying to become a qualified naturopath, and passed her ethics semester with high honors (597/600 points.)
DDS co-guardian seeking to and limit Valerie’s ability to make medical decisions
In a motion filed March 2 in Barnstable County Probate Court, the DDS co-guardian stated that he was seeking to transfer Valerie’s authority as “representative payee” regarding her son’s Social Security funds to either the May Institute or to himself.
The co-guardian’s motion also asked that Valerie’s medical decision making be limited to consenting to medical decisions made by others, and that Valerie be barred from removing her son from the May Institute home in the future.
The motion further stated that “it is believed” that Valerie’s “motivation” in bringing her son home to her “is primarily based on it being the only way for her to retain her present housing.” The motion referenced the eviction proceeding against Valerie.
Valerie said the co-guardian had been threatening for years to seek her removal as co-guardian of her son.
Not seeking financial remuneration
In a statement she sent to the Probate Court this week, Valerie said that she isn’t paid for caring for her son and isn’t seeking payment for that. “I want what everyone parent wants for her child. For him to be successful at his program, happy at his home life, and stable enough to mature,” she wrote.
Son’s behaviors and health are linked to his diet
Valerie said that while her son was at the first May Institute group home in Cotuit, his aggressive behaviors started to escalate, including banging his head against walls and tearing up his mattresses.
Valerie maintains that dietary changes that she insisted upon reduced the head-banging. Those dietary suggestions included giving him whole foods, including fresh vegetables, fruits, and whole-grains and essential oils supplements.
Last May, however, the DDS co-guardian stated to her in an email that her changes to her son’s diet constituted “a major step, especially if the reason is not medically required.”
Natural medicines and supplements are prescribed by doctor
Valerie said her son’s diet has been prescribed by his doctor, who has supported her request that the May Institute not feed him packaged processed foods. “The additives and chemicals are too much for his system,” she said.
Valerie added that alternative medicine has been her son’s primary medicine. She said he had strong allergies as a baby, including an allergy to infant Tylenol. “It’s no secret that a child with autism already has a compromised immune system. I had to work very hard to build his system up to be tolerant of vaccinations, and antibiotics and over-the-counter meds,’ she said. “ I knew a day would come where I wasn’t going to be in his life.”
Removed son temporarily from home in February
Valerie said that this past fall, she was informed by her son’s doctor that her son had been banging his head frequently in his group home. She said she had not been made aware of that by the group home staff.
The situation has continued, she said. In late February of this year, she took him home after a repeat of the incidents last fall. She said she again received a message that her son had been banging his head and had not received medical attention for it. “No one was returning my calls, so I went and got him,” she said.
That was when the DDS co-guardian filed the motion in court limiting her guardianship and preventing her from removing her son from the group home. In response, she said, she returned her son to the May Institute residence.
In an affidavit attached to his motion to limit Valerie’s guardianship, the DDS co-guardian maintained that Valerie had indicated in emails that she intended to bring her son home permanently. The co-guardian alleged that she was doing this to avoid eviction from her apartment.
Valerie maintained, however, that her intention in bringing her son home was to protect him. “My son communicates with behaviors,” she said. “When he’s frustrated he bangs his head. When he’s sick he bangs his head. I’m very concerned that with six residents in his group home and with only three and sometimes two staff on hand, that it’s a safety issue.”
Co-guardian opposed removal from group home despite abuse allegation
In March 2021, Valerie said she was informed that her son had been abused sexually by a staff member. She has still not been provided with details of the abuse or information as to whether there have been criminal charges filed in the matter.
In the wake of that incident, Valerie said she took her son home with her and sought placement of her son in another facility. But the DDS co-guardian objected to an alternative placement to the May Institute residence.
In a May 25, 2021, email, the DDS co-guardian stated, “I trust the May Institute and its staff to be working for the best for (Valerie’s son). I am not in favor of looking for another residential placement… I am unaware of any other residential program that would accept (her son) or be in his best interests.”
As late as June 2, 2021, the co-guardian said he continued to “fully object to his (Valerie’s son’s) removal from May until a response from DDS is obtained.”
Valerie said the co-guardian finally relented regarding removing her son from the first group home, and later in June of last year approved his move to the new residence.
Disregarded and disrespected by co-guardian and staff
After Valerie’s son was placed in his latest May Institute residence in Cotiuit last year, it appeared things were getting better. The staff appeared to be making an effort to follow her requests to improve her son’s diet, and were carrying out his occupational therapy plan.
But Valerie said her son’s continuing head-banging incidents earlier this spring and the co-guardian’s motion to limit her guardianship rights have convinced her nothing has really changed.
Valerie maintains she has been continually “disregarded and disrespected” by the DDS co-guardian and by the group home staff. “My son needs someone in addition to me who is willing to educate themselves in occupational therapy and willing to listen about alternative medicine, and, if necessary, advocate for my son,” she wrote in her recent statement to the probate judge.
We hope that DDS will reassess this case and the track record and actions of its co-guardian. Valerie’s rights as her son’s guardian should not be limited. We also intend to advocate for Valerie in her fight to stay in her apartment.
As a parent whose interest is maintaining the wellbeing of her child, Valerie should not also have to fight a system that is apparently trying to make her homeless.
COFAR blog 