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Our state budget priorities for Fiscal Year 2023
Fiscal Year 2023 in Massachusetts actually started this past Friday — on July 1 — but, as has become inceasingly the case in recent years, the state Legislature has gone past the fiscal year deadline wthout enacting a state budget.
For nearly a month, the Fiscal 2023 budget has been subject to closed-door deliberations in a conference committtee whose job is to iron out differences between the budget positions adopted this spring by the full House and Senate.
As a result, our budget priorities remain up in the air — dependent on the decisions being made by the six-member conference committee. Until the committee submits its report to the full Legislature, we won’t know the outcomes of the following priorities (not necessarily in order of importance to us):
1. More funding for direct-care wages
In early June, the Senate approved a budget provision requiring that any corporate human services provider receiving state funding under a special reserve account direct at least 75% of that funding to compensation for direct-care and front-line staff.
There was no such requirement in the House version of the budget. As a result, the House-Senate conference committee will decide whether the 75% provision stays in the final budget.
Earlier this year, both the House and Senate approved $230 million in funding for the reserve account for Fiscal 2023 — the same amount proposed by Governor Baker. The 75% funding provision would appear to require that $173 million in the reserve account be directed by human services providers to boost direct care wages.
We are supporting the 75% funding requirement although it is unclear how much the requirement would raise direct care wages. We have called for a mnimum direct care wage of $25 per hour.
2. Higher funding for state-operated group homes and Intermediate Care Facilities
State-operated group homes and the Wrentham Developmental Center and Hogan Regional Center would receive nominal dollar increases in the Fiscal 2023 budet.
But while the increase for the state-operated homes would have been roughly equal to the inflation rate when the governor proposed his budget in January, the proposed funding increase both for those residences and the Hogan and Wrentham centers would be lower than the inflation rate today.
Both the House and Sente have adopted the governor’s budget numbers for those line items. In inflation-adjusted terms, these budget numbers amount to cuts in funding for both the ICFs and state-operated group homes.
While we don’t expect the conference committee to increase funding for either line item, we hope it doesn’t cut either one.
State-operated group homes and the Hogan and Wrentham centers are the backbone of the Department of Developmental Services (DDS) system because they care humanely and efficiently for even the most profoundly intellectually disabled and medically involved people. They also provide jobs.
The developmental center or Intermediate Care Facility (ICF) line item has been cut by $68.4 million, or 39%, over the past decade, when adjusted for inflation.
That decrease in funding when adjusted for inflation stands in contrast to funding for the DDS corporate residential line item (5920-2000), which has skyrocketed over the past decade to over $1.4 billion. That is an amount that dwarfs the funding for state-operated group homes and the two remaining ICFs in Massachusetts.
3. Rectifying problems with state commission on the history of state facilities
We have urged members of the budget conference committee not to approve what appears to be a last-minute Senate budget amendment that would establish a state commission to study the history of institutional care of persons with developmental and other cognitive disabilities.
As is the case with proposed legislation still in committee to establish the commission, the Senate amendment does not make it clear that the proposed commission would acknowledge major improvements since the 1980s in care and conditions in the state’s developmental centers or ICFs.
Given that the House did not adopt a similar budget provision to establish the commission, the commission proposal is subject to the House-Senate conference committee.
We think it is unwise for the conference committee to adopt the commission idea as a budget provision. This is an idea that needs to work its way through the checks and balances of the committee process.
At the least, we think language should be added to the proposed legislation stating that the commission will examine the complete history of the state’s institutional facilities.
4. Correcting misleading language that the U.S. Supreme Court ordered the elimination of institutional care
We have asked legislative leaders to correct language in the budget that mistakenly implies that the U.S. Supreme Court ordered the closures of institutions for persons with developmental disabilities.
The budget language cites Olmstead v. L.C., the Supreme Court’s landmark 1999 decision, which considered a petition by two residents of an institution in Georgia to be moved to community-based care.
The Olmstead decision has been frequently mischaracterized as requiring the closure of all remaining state-run congregate care facilities in the country. The decision, however, explicitly states that federal law — specifically the Americans with Disabilities Act (ADA) — does not require deinstitutionalization for those who don’t desire it.
In one of three instances in which we are seeking changes or corrections, the budget language states that DDS must report as of December 15 to the House and Senate Ways and Means Committees on “all efforts to comply with …Olmstead…and… the steps taken to consolidate or close an ICF…” (my emphasis)
In letters sent in May to the chairs of the House and Senate Ways and Means Committtees, we noted that closing institutions was not the intent of the Olmstead decision, which was written by the late Justice Ruth Bader Ginsburg.
We are concerned that the misstatements in the ICF line item in the state budget each year could allow the administration and Legislature to justify continuing to underfund the line item, and possibly to seek the eventual closures of the Wrentham and Hogan centers.
Once again, given that this language is in both the House and Senate versions of the budget, it isn’t clear that the conference committee will make any changes in this particular budget. But whatever the short-term outcomes, we will continue to fight for these priorities.
We’ve been in a nine month battle with DDS to view 8 emails about closures of state-operated group homes
Last week, we filed the second of two appeals with the state Public Records Division for eight internal emails from the Department of Developmental Services (DDS) that may concern plans to close or consolidate state-operated group homes.
After two months of negotiations with DDS last fall, we had narrowed our Public Records request to just those eight emails. But following the negotiations, DDS simply declined in December to provide them, contending they are exempt from disclosure under the state’s Public Records Law.
As of the filing of our second appeal last week, our battle with the Department for records concerning its state-operated group home policies had stretched to nearly nine months.
In denying our request for the eight emails in December, DDS cited what is known as “Exemption d” to the Public Records Law, which says that a state agency can decline to disclose internal records “relating to policy positions being developed by the agency.”
As I’ll explain further below, we have countered that Exemption d does not apply in this case because the policy in question was adopted by the administration last August, and was no longer being developed when we requested the emails. We have suggested that the state Public Records Supervisor Rebecca Murray inspect the emails herself to determine whether Exemption d does or does not apply to them.
We’ve been concerned about the future of the state-operated group home network for years. While those homes are likely to recieve a nominal increase in state funding in the coming fiscal year, it is clear that DDS has been allowing the number of residents in the state-operated group home network to drop in the past several years. Yet the Department has not provided any public information about its intentions regarding the future of the state-run residental system.
State-operated group home network facing unique pressures
We view the state-run group home system as as a crucial backstop for care in the DDS system as a whole. Staff in the state-run network generally receive higher pay and benefits and more training than their counterparts in the corporate provider system.
Yet the state-operated system has been facing unique pressures, particularly since the start of the COVID crisis. Last October, we received a report from a COFAR member that up to seven state-run homes in the southeastern region of the state had been closed because staff in them had not been vaccinated for COVID.
Just weeks prior to that – in August — Governor Baker issued an executive order requiring all state employees to be vaccinated by October 17 or ultimately be terminated. That vaccination mandate applies only to staff of state-run residential facilities. It does not apply to the much larger network of DDS-funded group homes that are run by corporate providers.
Baker administration would not provide information
We initially emailed DDS Commissioner Jane Ryder and the press office at the Executive Office of Health and Human Services (EOHHS) on October 14 with questions about the reports of closures and consolidations in the state-operated group home network.
Ryder never responded to our query. A spokesperson for EOHHS said in a response to our email that we would have to file a Public Records Request for that information.
Records request narrowed from more than 1,000 emails to just 8
Based on the EOHHS response, we filed a Public Records request with DDS on October 15 for internal records that concerned closures or consolidations of DDS state-operated group homes due to unvaccinated staff or for other reasons.
In an initial response to our request on October 29, DDS stated that there were potentially 1,600 emails responsive to our request, and that producing the documents would require us to pay a $1,000 fee.
We agreed to narrow our request. And in a December 13 written response to us, a DDS attorney said the narrowed search had turned up a total of eight emails that were determined to be responsive to our request.
DDS cites “implementation of” the governor’s executive vaccination order as an “ongoing and evolving” policy
But despite identifying the eight emails as responsive, the DDS attorney stated in the December response that all eight of those emails were being withheld because they fell under Exemption d to the Public Records Law.
The attorney described the “implementation” of the governor’s vaccination order as “an ongoing and evolving policy matter.”
Renewed request for the 8 emails
In May of this year, after an initial appeal that did not result in the production of any additional documents by DDS, we tried again. We renewed our request for just the eight emails with the intention of appealing for a second time if DDS once again cited Exemption d. That is, in fact, what happened.
In a June 13 response, the DDS attorney stated that the “implementation” of the governor’s executive order was “still an ongoing and evolving policy matter which is still subject to the deliberative exemption.”
This time, the DDS attorney stated that:
While the governor’s executive order was implemented on August 19, 2021, ongoing and evolving policy matters continue related to the Agency’s implementation of the Executive Order, and the deliberative exemption applies to those policy decisions.
The DDS attorney added that the governor’s executive order had:
…impacted the discussion about and process of handling staffing shortages at DDS. The vaccine policy is still impacting the Department’s staffing shortage. Therefore, the records are still exempt under (Exemption d). (My emphasis)
DDS conflates policy implementation with policy development
In our second appeal of DDS’s response — which we filed on June 23 — we argued that the Department was “conflating the separate steps of policy development and policy implementation.” We noted that Exemption d refers to policy positions “being developed” by an agency. The exemption does not say that records relating to policy positions that are “being implemented” are exempt from disclosure.
We pointed out that public policies or policy positions are normally implemented after they have been developed or formulated. The implementation of policies can go on for years or decades or more. As we put it:
Certainly, the intent of “Exemption d” was not to allow agencies to assert that so long as policies are continuing to be implemented, all records concerning those policies remain exempt from disclosure.
We added:
As of June 23, now more than 10 months after the governor signed Executive Order 595, (DDS) says the policy is “still impacting the Department’s staffing shortage,” and has “impacted the discussion about and process of handling staffing shortages at DDS.” Here again, (DDS) appears to be talking about problems or issues the Department is having in implementing the executive order.
Finally, we suggested that the Public Records Supervisor review the eight emails in-camera to determine whether or not Exemption d does or does not apply to them.
In sum, we don’t know what is in the eight emails or whether the emails might shed any light on DDS’s plans for the future of the state-operated group home network. But given the administration’s unwillingness to provide any public information about those plans, all we can do is to fight for documents that are legally available and that might disclose the administraton’s intentions.
The fact that DDS is fighting back so hard to prevent the release of just those eight emails leads us to believe we may be onto something in seeking their release.
Senate budget amendment for commission on history of state schools continues to raise concerns of bias against state care
In what appears to be an end run around the legislative committee process, the state Senate last month approved an amendment to state budget legislation that would establish a state commission to study the history of institutional care of persons with developmental and other cognitive disabilities.
But as is the case with proposed legislation still in committee to establish the commission, the Senate amendment does not make it clear that the proposed commission would acknowledge major improvements since the 1980s in care and conditions in the state’s developmental centers or Intermediate Care Facilities (ICFs).
We have previously raised concerns about the legislation to establish the commission (S.1257, H.2090), which has been in the committee process for more than a year.
Given that the House did not adopt a similar budget provision to establish the commission, the proposal will be subject to a House-Senate conference committee that is currently meeting on the Fiscal Year 2023 state budget.
The Senate budget amendment addresses some concerns we previously raised about the proposed commission legislation, including language that indicates a bias against the state’s two remaining developmental centers – the Wrentham Developmental Center and the Hogan Regional Center in Danvers.
We do support efforts to study the history of the former state schools in Massachusetts for persons with developmental disabilities. Toward that end, we support proposed legislation to open up all historical state records to public inspection (S.2009, H.3150). But we want to ensure that the proposed commission considers the full history of these institutions, not just the darkest parts of that history prior to the 1980s.
Our concern is that proponents of further deinstitutionalizaton and privatization in the Department of Developmental Services (DDS) system could use the commission to call for the closures of the Wrentham and Hogan centers, and potentally other state-run residential facilities.
As we have pointed out many times, Wrentham and Hogan today provide state-of-the-art care, and are closely tied to their surrounding communities.
Budget amendment would provide four seats for residents and family members at Wrentham and Hogan
In one major improvement over the proposed legislation in committee, the Senate budget amendment would give residents and family members of the Hogan and Wrentham centers four out of what appear to be 16 seats on the commission.
But even in the Senate amendment, the makeup of the commission appears to still be largely dominated by opponents of the ICFs.
Also troubling is that pro-deinstitutionalization organizations such as the Arc of Massachusetts would specifically appoint at least three members of the commission. Meanwhile, the Hogan and Wrentham members would be appointed by the governor, who has also been a supporter of deinstitutionalization and the privatization of public services.
Commission proponent’s op-ed focuses on dark and early period of Fernald Center’s history
It is also troubling that some key proponents of the commission have continued to publicly express largely negative views of the history of the state schools without mentioning the significant upgrades that occurred starting in the 1980s in those institutions.
In discussing the Senate budget amendment in an op-ed in The Boston Globe on June 7, Alex Green, a major proponent of the commission, focused on the darkest years in the history of the state facilities in Massachusetts. Green specifically noted the connection of the former Fernald Center, in particular, to the eugenics movement in the late 19th and early 20th centuries.
Eugenics has been correctly characterized as a “scientifically erroneous and immoral theory of ‘racial improvement’ and ‘planned breeding.'” It gained popularity during the early 20th century.
In protests Green has organized against Fernald, and in petitions to Waltham Mayor Jeanette McCarthy, Green has similarly focused exclusively on human rights abuses at Fernald in the first half of the 20th century. The Arc and other advocacy organizations have signed on to those petitions.
The early history of Fernald and the other state schools in Massachusetts is certainly a deeply troubling one. And the man for whom the institution was later named — Walter E. Fernald — was initially an active proponent of eugenics laws that were being adopted in the late 19th and early 20th centuries in the U.S.
But by the 1920s, even Walter Fernald had come to reject the principles of eugenics, and “became a supporter of community placement…” for persons with developmental disabilities, according to the Encyclopedia Britannica.
The commission legislation does not specify that the commission would examine the history of Fernald subsequent to Judge Tauro’s involvement
We have repeatedly objected to the commission legislation on the grounds that it doesn’t specify that the commission would consider the full history of the state schools.
The improvements at Fernald and the other institutions were undertaken as a result of the intervention of the late U.S. District Court Judge Joseph L. Tauro. Tauro noted those improvements when he disengaged from his oversight of a landmark consent decree case in 1993. He wrote that the improvements had “taken people with mental retardation from the snake pit, human warehouse environment of two decades ago, to the point where Massachusetts now has a system of care and habilitation that is probably second to none anywhere in the world.”
The Senate budget amendment provides little specificity as to the historical focus of the commission. It does, however, contain this fairly convoluted sentence, which raises a number of questions about the commission’s focus. The sentence states that the commission will:
…design a framework for public recognition of the commonwealth’s guardianship of residents with disabilities throughout history, which may include, but shall not be limited to, recommendations for memorialization and public education on the history and current state of the independent living movement, deinstitutionalization and the inclusion of people with disabilities. (my emphasis)
Given the commission will be largely dominated by organizations in favor of deinstitutionalization, we are concerned any such study of that issue may be biased.
It is also curious that the history and current state of the independent living movement and deinstitutionalization would be included in the commission’s charge, given the subject of the commission is the history of state institutions.
The Senate amendment doesn’t define the “independent living movement.” Also, a complete study of just deinstitutionalization would take the effort of a separate commission in itself.
In addition, we think it is unwise for the budget conference committee to adopt the commission idea as a budget provision. This is an idea that needs to work its way through the checks and balances of the committee process.
As part of that committee process, the concerns we’ve raised about the makeup and possible bias of the commission still need to be addressed. At the least, we think language should be added to the proposed legislation stating that the commission will examine the complete history of the state’s institutional facilities.
The full history of the state institutions for persons with cognitve disabilities in Massachusetts starts with the founding of those facilities, and it continues to the present day.
State budget language mistakenly implies Supreme Court ordered closures of institutions for persons with developmental disabilities
COFAR is urging state legislative leaders to correct language in state budget legislation that mistakenly implies that the U.S. Supreme Court ordered the closures of institutions for persons with developmental disabilities.
The language in a budget line item cites Olmstead v. L.C., the Supreme Court’s landmark 1999 decision, which considered a petition by two residents of an institution in Georgia to be moved to community-based care. The Olmstead decision has been frequently mischaracterized as requiring the closure of all remaining state-run congregate care facilities in the country.
According to this characterization, Olmstead further required that all residents of those facilities, which include Intermediate Care Facilities (ICFs), be transferred to community-based group homes.
In one of three instances in which COFAR is seeking changes or corrections, the Massachusetts budget line item language states that the Department of Developmental Services (DDS) must report as of December 15 to the House and Senate Ways and Means Committees on “all efforts to comply with …Olmstead…and… the steps taken to consolidate or close an ICF…” (my emphasis)
However, in letters sent last week to the chairs of the House and Senate Ways and Means Committtees, COFAR noted that closing institutions was not the intent of the Olmstead decision, which was written by the late Justice Ruth Bader Ginsburg.
As our national affiliate, the VOR, has pointed out, “the Court’s determination in Olmstead supports both the right to an inclusive environment and the right to institutional care, based on the need and desires of the individual.” (my emphasis)
We are concerned that the misstatements in the ICF line item in the state budget each year could allow the administration and Legislature to justify continuing to underfund the line item, and possibly to seek the eventual closures of all remaining ICFs in Massachusetts. Those ICFs consist of the Wrentham and Hogan Developmental Centers, and three state-run group homes on the campus of the former Templeton Developmental Center.
The problematic language in line item 5930-1000 is included in both the House and Senate Ways and Means Committee versions of the budget for Fiscal Year 2023, which begins on July 1.
Declining funding in line item tracks budget language history
COFAR first identified the budget line item language last year, and reported that the language appears to have been included in the line item in state budgets going back as far as Fiscal Year 2012.
It is perhaps not coincidental that since Fiscal Year 2012, four of six remaining developmental centers in the state have been closed. And when the Fiscal Year 2023 budget is adopted, the ICF line item will have been cut since Fiscal 2012 by $78.2 million, or 42%, when adjusted for inflation. (Those numbers are based on the Massachusetts Budget and Policy Center’s Budget Browser app.)
Three of the DDS reports required by the line item language — for calendar years 2018, 2019, and 2020 — discussed a steadily dropping population or census at the Wrentham and Hogan centers, and practically zero admissions to those facilities after 2019 as well.
We have noted that the lack of admissions to Wrentham and Hogan indicate that the administration is unlawfully failing to offer those settings as residential options to indivdiuals with developmental disabilities who are seeking residential placements in the state.
Three mistaken or misleading statements
There are what appear to be at least three mistaken or misleading statements in the language in line item 5930-1000: (The first item below is simply a case of wrong terminology.)
1. The budgetary line item language mistakenly identifies ICFs as “intermittent care facilities.” The correct term is “intermediate care facilities.”
2. As noted, language in the line item mistakenly implies that the Olmstead decision was intended to close ICFs. In fact, Olmstead held that:
We emphasize that nothing in the ADA (Americans with Disabilities Act) or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings. . . Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it. (my emphasis)
3. A statement in the line item, which lists three conditions for discharging clients from ICFs to the community, leaves out one of the key conditions in Olmstead, which is that the client or their guardian does not oppose the discharge.
The House and Senate line item language states that in order to comply with Olmstead, DDS:
…shall discharge clients residing in intermittent care facilities for individuals with intellectual disabilities…to residential services in the community if:
(i) the client is deemed clinically suited for a more integrated setting;
(ii) community residential service capacity and resources available are sufficient to provide each client with an equal or improved level of service; and
(iii) the cost to the commonwealth of serving the client in the community is less than or equal to the cost of serving the client in an ICF/IID…” (my emphasis)
The first two of those conditions in the line item language are contained in the Olmstead ruling. The third condition about cost being less in the community actually isn’t contained in Olmstead.
The third condition in Olmstead for discharging clients from ICFs is that such a discharge is “not opposed” by the client and/or their guardian. That condition is not included in the House or Senate budget line item.
Here is the actual language from the Olmstead decision:
…we conclude that, under Title II of the ADA, States are required to provide community-based treatment for persons with mental disabilities when the State’s treatment professionals determine that such placement is appropriate, the affected persons do not oppose such treatment, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities. (my emphasis)
We have asked Senator Michael Rodrigues and Representative Aaron Michlewitz, the chairs of the Senate and House Ways and Means Committees respectively, to consider redrafting this line item language to correct these mistakes.
UPDATE: Senate budget amendment is redrafted to require that provider funding go to direct care workers
After COFAR questioned a state Senate budget amendment earlier this week that would provide almost $600 million in funding to corporate human services providers without requiring that any of that funding be spent to boost wages for direct care workers, we’ve learned that the amendment was redrafted yesterday to include that requirement.
According to the redraft of Amendment 466, any human services provider receiving funding under a budgetary provider reserve account must direct at least 75% of that funding to compensation for “direct care, front-line and medical and clinical staff.”
Amendment 466, which has been filed by Senator Adam Gomez, Senate chair of the Children, Families, and Persons with Disabilites Committee, would also increase the provider reserve account from $79 million to $581.6 million in Fiscal Year 2023.
The direct care compensation requirement in Senator Gomez’s redrafted amendment is now identical to language adopted by the Senate Ways and Means Commitee last week with regard to the reserve account, known as the Chapter 257 account.
In a blog post on Tuesday, COFAR reported that the original draft of Gomez’s amendment would significantly raise the reserve account level while eliminating the 75% direct care wage funding requirement. The redrafted amendment both raises the reserve account level and includes the 75% requirement.
On Monday, I had sent an email to Senator Gomez and his staff, which was based on the original language in Amendment 466. In my message, I said we were concerned that without specific language requiring that funding in the reserve account be used for direct care wages, there is little or no assurance that adoption of his amendment would lead to higher wages for those workers.
No one from Gomez’s office has yet responded to my email. But we were informed yesterday that the senator’s office had redrafted the amendment to include the 75% funding requirement, and that the requirement had reportedly been left out of the orignal draft “by mistake.”
The redraft of Amendment 466 is available on the budget page of the Legislature’s website.
Senator Gomez’s redrafted amendment would still add more than $350 million to the amount approved for the provider reserve account by the Senate Ways and Means Committee. The Ways and Means Commmittee approved $230 million in funding for the account for the coming fiscal year — the same amount proposed by Governor Baker and approved by the House last month.
Based on a request by a coalition of provider organizations, Senator Gomez’s amendment would bring the total reserve account funding to $581.6 million.
The Senate is scheduled to vote next week on the budget for Fiscal Year 2023 and on amendments filed to it.
Under the Senate Ways and Means budget plan, the 75% funding provision would appear to require that $173 million in the reserve account be directed by human services providers to boost direct care wages.
Based on the much larger funding total in Senator Gomez’s amendment, the amount directed to direct care wages would appear to be $436 million.
All of this still leaves a number of questions. For instance, how much would the $436 million funding requrement actually boost direct care, front-line, and medical and clinical staff wages? Is the 75% language sufficient to ensure that the money would indeed go to those workers?
As we reported earlier this week, both the state inspector general and the state auditor have found that controls are needed over spending by the providers to ensure that the funding goes to direct care workers.
In the House, a budget amendment, which was rejected last month, would have required that the providers sign a form attesting to a plan for spending the reserve account funding. Neither the Senate Ways and Means language nor Senator Gomez’s amendment contain that attestation requirement.
It’s also the case that while the Senate now will approve a 75% funding requirement regarding the reserve account, there is no such requirement in the House version of the budget. So a House-Senate conference committee will have to decide whether the 75% provision stays in the final budget.
But even with those questions surrounding it, we still support the 75% funding provision, and hope it stays in the final budget.
Senate budget committee revives measure targeting state funding for direct care wages; but provider amendment would undo it
The state Senate’s Ways and Means Committee has revived a state budget provision for the coming fiscal year that would require that hundreds of millions of dollars be spent to boost direct care wages in the human services system.
A similar provision was rejected last month in the House.
But an amendment filed this past week in the Senate on behalf of the corporate human services providers would override the Senate Ways and Means provision requiring that 75% of funding in a reserve account for the providers go toward boosting wages for their direct care workers.
The Senate budget amendment, which was filed by Senator Adam Gomez, would significantly raise the reserve account level while eliminating the 75% direct care wage funding requirement. Gomez is Senate chair of the Children, Families, and Persons with Disabilities Committee.
The Senate is scheduled to vote next week on the budget for Fiscal Year 2023 and on amendments filed to it.
Last month, a budget amendment filed in the House to impose the 75% funding requirement was killed by the House leadership even though it had garnered 107 cosponsors, an amount comprising more than two thirds of the House membership.
Last week, the Senate Ways and Means Committee approved an overall state budget bill that revives the 75% requirement. The Ways and Means Committee also approved an increase in the provider reserve account, known as the Chapter 257 reserve account, from $79 million to $230 million.
Senator Gomez’s amendment (Amendment No. 466) would add $350 million to the $230 million approved for the reserve account by the Senate Ways and Means Committee and previously by the House. The amendment’s total proposed funding of $581 million in the reserve account has been sought by a coalition of corporate human services providers.
However, Gomez’s amendment no longer contains any language that requires that the additional $350 million go toward direct care wages.
Like the previous House amendment, the Senate Ways and Means language requires that 75% of the reserve account funding amount be used for “compensation for direct care, front-line and medical and clinical staff,” and states that the funding may include “hourly rate increases, wraparound benefits, shift differentials, overtime, hiring and retention bonuses or recruitment.”
Under the Senate Ways and Means plan, the 75% funding provision would require that more than $170 million be earmarked by corporate human services providers for direct care wages.
The House amendment went a step further than the Senate Ways and Means Committee provision by requiring that the providers sign a form attesting to a plan for spending the $170 million. The Senate Ways and Means provision doesn’t have that attestation requirement.
COFAR is strongly supporting the 75% funding requirement because it would address a key reason for 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 an email I sent to Senator Gomez and his staff yesterday, I noted that we are concerned that without specific language requiring that funding in the reserve account be used for direct care wages, there is little or no assurance that adoption of his amendment would lead to higher wages for those workers. I haven’t yet received a response to my message.
IG and state auditor have both found a lack of controls over promised funding for direct care wages
I also noted in my email to Gomez that the Massachusetts Inspector General’s 2021 Annual Report stated that the IG had examined how human services providers spent $139 million in federal COVID relief funds that the adminiistration disbursed in April 2020.
The IG report said the $139 million was supposed to be spent on “staffing, PPE, and infection control activities.” However, the Bureau received several hotline complaints “that the vendors received excessive funding and misspent it on executive compensation.” (my emphasis)
The Annual Report stated that the IG investigated the complaints and “found evidence that some vendors may have used the funds for unauthorized expenditures.”
The IG Annual Report added that the IG recommended that providers provide detailed expenditure reports, and that the Executive Office of Health and Human Services “coordinate and share information with DDS and other agencies.” However, the report said that EOHHS did not fully implement these recommendations.
Also, in a 2019 report, State Auditor Suzanne Bump’s office reported that Chapter 257 funding, which was at least partly intended to boost direct-care wages, “likely did not have any material effect on improving the financial wellbeing of these direct-care workers.”
The bottom line is that additional funding is needed to ensure that direct care wages in the human service sector are boosted to competitive levels. But controls are clearly needed to ensure that the money gets where it’s supposed to go, and doesn’t go instead into executives’ pockets.
Unfortunately, Senator Gomez’s amendment doesn’t provide for needed controls or even a spending reqirement with regard to the provider reserve account. The Senate Ways and Means language does at least establish a requirement that the increased funding go to direct care workers.
Mother says she is being ‘railroaded’ out of her guardianship by unfair court report
The mother of an intellectually disabled man says she is being unfairly accused in probate court of having a conflict of interest in caring for her son, and that the conflict charge is being used to limit and possibly eliminate her co-guardianship rights.
Valerie Loveland said that in an April 19 Barnstable County Probate Court hearing on Zoom, an investigative attorney appointed by the judge presented a report concluding that Valerie had a conflict because she both sells natural medicinal products to customers and provides those products to her son.
Valerie maintains, however, that she derives no material benefit from the arrangement involving her son. She said her son buys the products directly from the company, Young Living Brand. She said his primary medical care provider approves all of his alternative medicines in accordance with his group home’s policy.
Valerie’s 24-year-old son is a resident of a group home on Cape Cod run by the May Institute, a corporate provider to the Department of Developmental Services (DDS). Valerie has asked that her son’s name be kept private.
We have previously reported that Valerie has been fighting both a motion to limit her co-guardianship of her son and a move to evict her from her subsidized apartment due to an alleged technical violation of her lease.
The motion to limit Valerie’s co-guardianship was filed in March by John Cartwright, an attorney who is paid by DDS to serve as Valerie’s son’s other co-guardian. Cartwright’s motion seeks to remove Valerie’s authority to make medical decisions for her son and to transfer her authority as representative payee for her son’s Social Security funds to the May Institute.
(Valerie said yesterday that her housing situation was being resolved favorably for her after discussions with housing officials.)
Health clinic program director approves natural medicines
In an April 27 letter, Gretchen Eckel, a certified physician assistant and a program medical director at Outer Cape Health Services, said Valerie’s son’s natural medicines have been subject to “shared decision making to permit these treatment plans.”
Eckel said she has seen “no harm or risks” to Valerie’s son caused by the use of the alternative medicines. She described Valerie as “a tremendous advocate for (Valerie’s son’s) needs, and I believe she has always had his best interests in mind.”
Valerie says she was not interviewed by guardian ad litem
Valerie contends she is being “railroaded” by Cartwright’s motion and by the report alleging that she has a conflict of interest in providing the natural medicines to her son. The report was writtten by Christopher Lebherz, who was appointed by the court in the case as a guardian ad litem (GAL). In Massachusetts, a GAL is an independent investigative official, often an attorney, who assists the court in guardianship cases.
Valerie said she was neither interviewed by Lebherz for his report, nor was she provided with a copy of the report either before the hearing or since. She was allowed by the judge in the case, Susan Sard Tierney, only to view the report and take notes on it in the courthouse, following the hearing. She was not allowed to make a copy of it.
The GAL’s report has been made available, however, to both Cartwright and to Carol Coyne, a DDS attorney in the case, according to an April 19 order issued by Tierney.
Valerie said the GAL’s report indicates support for the motion by Cartwright to limit her co-guardianship. Due to the GAL report’s confidential nature, COFAR has not been able to obtain a copy of it.
Valerie termed “caring and concerned mother”
In an email in response to a query I sent, Lebherz said he was “concerned about a conflict of interest or the appearance of a conflict of interest (on Valerie’s part) regarding rep payee.”
Lebherz also said he “spoke with Valerie and all other interested parties” in the case. He said he “asked her (Valerie) and others to summarize all of their positions and send it all along to me.”
Lebherz also said he did not recommend that Valerie lose her medical decision making authority. He added that he “reviewed the case history and all filings,” and that he visited the May institute.
Lebherz declined to respond to my follow-up question whether he had found or presented any evidence in his report that Valerie had derived any material financial benefit from providing natural medicines to her son.
He also declined to respond to my follow-up question whether “speaking” with Valerie and asking her to “summarize her positions” constituted an interview, or whether he had specifically asked her about the alleged conflict of interest.
Lebherz, nevertheless, said, “All parties agree Valerie is a caring concerned mother. These are difficult issues and situations and we all try to do our best.”
While Lebherz said he didn’t recommend that Valerie lose her medical decision making authority, Valerie said that Lebherz stated in his report that he agreed with Cartwright’s motion that her medical decision making be limited to consenting to medical treatments directed by others.
“I raised (her son) completely alone,” Valerie said. “I worked where I could, managed his money and medical appointments, all of it for 18 years, below the poverty line. Now they’re trying to take everything away. What have I done? I’ve never heard of anyone doing everything right and being treated so badly.”
Guardian ad litem standards require an interview and detailed fact finding
Under Massachusetts standards for guardians ad litem, the GAL must “provide each party with a separate interview so that each party may speak with candor.” (Section 4.4)
The GAL must also “conduct the investigation in a fair and balanced manner”(6), and the GAL’s report “should provide accurate, detailed and balanced information about the parties and their children.”(8)
In addition, the GAL report should include “all relevant facts collected from all sources, including facts that are consistent and inconsistent with other reported facts.”(8.2). Further, the report must “set forth the connection between the facts and the conclusions or recommendations.”(8.5)
If Lebherz’s report concluded that Valerie has a conflict of interest, the GAL standards would appear to require that the report include relevant facts that support that conclusion, such as the extent of any financial benefit that Valerie received as a result of the alleged conflict.
No material benefit from providing natural medicines to son
Valerie said the GAL’s report alleged that she has a conflict of interest because she has provided natural medicines and other products to her son, and that she has a business in which she sells those products. She said that appears to be the primary reason that Lebherz recommended that she be removed as rep payee and that all medical decisions be made solely by Cartwright.
In fact, Valerie said, she has not derived a material financial benefit from her son’s use of the medicines. She said her son purchases the products directly from the company with his own money. She and her son both have accounts with the company and receive points for their purchases.
Valerie said she receives an average of $5 a month in “commissions” from her son’s purchases. “I set it up so that when I died whoever handles his account could continue ordering his supplies for him,” she said.
It doesn’t appear that the fact that Valerie sells natural medicines and has established an account for her son for those products would be a conflict unless she received a material financial benefit from that. As a user and seller of natural medicines, she might naturally be inclined to encourage her son to use them.
Valerie says Cartwright, the DDS co-guardian, has long opposed her efforts to provide natural medicines and essential oils to her son.
In her April 27 letter in support of Valerie, Eckel, the certified physician assistant, said Valerie’s son has been her primary care patient since 2014, and that she last examined him on April 27.
Eckel said Valerie raised her son since birth, and raised him independently since the age of three when his biological father left them. She said that since Valerie was appointed as her son’s co-guardian in 2016, Valerie has attended most of his medical visits “with the exception of a very few visits” when he was attended by staff of the May Institute.
Eckel added that “Valerie has opted for natural treatment options when available and safe for (Valerie’s son’s) ailments over the years, and we have used shared decision making to permit these treatment plans as I have seen no harm or risks to these strategies.”
Valerie said natural or alternative medicines are considered complementary to, and not a replacement for, western or modern medicines. She said the natural supplements and treatments provided to her son are in addition to his modern medications, and that he is fully vaccinated for COVID and for childhood diseases.
“I had an informed conversation with Gretchen (Eckel) regarding the vaccinations and their effectiveness, side effects, etc., before giving consent to the May to proceed with their vaccination clinics,” she said. She added that “May staff also reports he’s doing great since these changes (use of natural medicines) have been made.”
This is one of several cases on which we’ve reported, which raise questions about the fairness of the DDS and probate court systems, particularly when it comes to family members who lack financial resources or attorneys to represent them.
Our justice system isn’t supposed to function differently for people who lack those resources; but we’ve seen a number of instances (see here and here) in which that has unfortunately been the case.
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 