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Intelligent young woman with cerebral palsy trapped in DDS group home
When one speaks with Ann Macdonald, one gets an impression of her as articulate, no-nonsense, and yet cheerful and friendly.
Ann, 23, came to the U.S. from China when she was 16. She has cerebral palsy, a medical condition that keeps her confined to a wheelchair and limits her ability to fulfill basic functional needs such as showering and dressing without help.
A psychiatrist concluded last year that Ann has normal intellectual functioning and “has demonstrated remarkable functional independence.” But she has been trapped for the past year in a Department of Developmental Services (DDS)-funded group home run by Eliot Community Human Services in Stoughton.
Ann Mcdonald
Ann has remained there apparently based on a mistaken assertion and diagnosis that she has a brain injury and an intellectual disability.
Ann and two nurses who cared for her in her previous residential placement at the Pappas Rehabilitation Hospital, maintain that her DDS Individual Support Plan (ISP) contains a mistaken departmental activity code that characterizes her as having an Acquired Brain Injury (ABI).
That code has enabled Eliot to receive funding for Ann from DDS under an ABI Home and Community Based Services (HCBS) Medicaid waiver. But Ann says she doesn’t have a brain injury, and that claim is backed up by the nurses.
Also, Kaveh Ghaedi, a Boston-based psychiatrist, maintains that, “Ms. Macdonald’s presentation, history, and accomplishments do not align with the criteria for Intellectual Disability.”
Dr. Ghaedi last year provided testimony in probate court in Ann’s successful effort to terminate a guardianship of her that was held by an aunt. Her aunt willingly stepped down, agreeing that Ann didn’t need a guardian.
Nancy Silva, who is retired as a nursing assistant at the Pappas center, had this to say about Ann:
If I had a company, I would hire Ann to work there. She’s very smart and knows exactly what she is doing. When she first got here from China, she didn’t speak English, but learned it by watching TV. She’s like a sponge. She absorbs everything and goes with it.
Ann wants her own place to live where she can receive services from Personal Care Attendants (PCAs). That, she says, will enable her to live an independent life, which is something DDS contends it wants for everyone in its care.
Ann maintains that it’s not that DDS and the provider are opposing her wish to live on her own. It’s that they have done little or nothing over the past year to enable her to find a new place. They haven’t, as promised, identified any specific suitable residential settings for her.
In the meantime, Ann says, she feels her life is on hold in the current residence.
“It’s not a comfortable or safe place for me,” she said. “I’m not doing the things a 23-year-old girl should be doing. I don’t have independence. No freedoms.” She said that when she first told her previous DDS service coordinator last June that she wanted to leave, “she (the service coordinator) told me I was not capable of making my own choices or doing things myself. But that’s not true.”
“She (Ann) shouldn’t have been placed in that (Eliot) home,” said Janette Packard, a registered nurse, who cared for Ann at the Pappas center. “She doesn’t have cognitive deficits. She has no learning deficits.”
Dr. Ghaedi found that, among other things, Ann has shown that she can independently navigate the state’s healthcare system, can manage her own finances, and was able to arrange for her own disability-accessible transportation to community events.
Silva says the decision to place Ann in the Eliot home originated with the management at Pappas when Ann turned 22 and was transferred to the DDS system. She contends it was the wrong decision, and one she had urged the Pappas administrators not to make.
Both Packard and Silva have maintained friendships with Ann and are advocates for her. Silva contends that the Eliot group home staff did not react well to Ann from the start because she was much more active in speaking up for herself and her needs than were the other residents of the home.
“They (the staff) didn’t like it that she could speak up,” Silva said, “that she could articulate what she needed.”
The other clients in Ann’s group home are very nice, Silva says, but they are in their 50s and have nothing in common with her. “This group home is a horrible place to put a kid in.”
Not following the ISP
Ann and the two nurses contend that the staff are not following many of her ISP requirements such as one which states that Ann is capable of standing up from her wheelchair with help from the staff. Instead, Ann said, the staff insist on using a Hoyer lift at all times with her. A Hoyer lift is an electronic or hydraulic device that helps mechanically transfer patients from one surface to another.
In a recent email to her service coordinator, Ann expressed her frustration at that, writing, “I weigh 100 lbs. give or take and can help with standing, at least I could before I got here. This really bothers me that I may lose some of my function and ability because staff can’t or won’t follow the care plan.”
Ann’s ISP also discusses her desire to get a job, and states that DDS will submit a job referral for her. But Ann said that hasn’t happened. Ann has been applying on her own for jobs, but keeps getting turned down by prospective employers.
Silva maintains that DDS should be helping Ann in that job-finding effort, but isn’t. Ann particularly needs a DDS Community Based Day and Work (CBDW) program, which could provide training and other employment-related services, but DDS has not provided such a program for her. In her ISP, Ann mentions her desire for a CBDW program.
There are other problems with the group home.
Ann notes in her ISP that one of her strengths is cooking Chinese food. But she and Nancy say that the staff rarely let her cook the meals she prefers. She has an air fryer, for instance, but says the staff rarely allow her to use it.
Meanwhile, Ann says, some of her belongings from her four years at Pappas remain packed in boxes in the Eliot residence. A year after her move to the group home, the staff haven’t unpacked all of the boxes.
In an April 10 email to her new service coordinator, Ann said that while Silva helped her unpack most of her belongings, that “should not be left for my visitors or my therapists as they are not hired by Eliot to do (that).”
Wrong disability code
Ann’s current ISP lists her services in her group home as “3751-Residential Habilitation.”
A DDS document describes this number as an “activity code” for “Acquired Brain Injury Residential Services.” It isn’t clear who first selected this code and placed it in her ISP, but Ann maintains there is no evidence in her medical records that she has a brain injury. As a result, she hasn’t signed the ISP.
Packard contends that Ann’s ISP should list the activity code as 3153 for “Adult Long-term Residential Services.” Unless the code is changed, Ann and Packard say, DDS may continue in the future to place her in inappropriate settings and provide the wrong services for her.
Faulty psychological testing
In his assessment of Ann, Dr. Ghaedi noted that in 2021, Ann was tested and determined to have a moderate intellectual disability. However, Ghaedi stated that based on his own assessment of her, “this (psychological testing designation) doesn’t align with her observed abilities.”
Ghaedi noted that individuals with moderate intellectual disability “typically exhibit significant deficits in abstract reasoning, learning, and problem-solving, often requiring caregiver support for basic tasks. In contrast,” he wrote, “Ms. MacDonald has demonstrated remarkable functional independence.”
Ghaedi maintained that psychological testing can be unreliable when administered to certain populations, particularly individuals with cerebral palsy. Such testing, he said, should take into account the impact of physical and speech limitations associated with that condition. However, he said, there was no evidence to suggest that this was done in Ann’s case.
Ann added that the psychological testing was done just a couple of years after she arrived in the U.S. and before she became as proficient as she is now with the English language.
In sum, there appears to be no question that Ann has been done a disservice by DDS in placing her in an inappropriate residential setting based on a mistaken departmental activity code and based on potentially flawed psychological testing.
DDS should act immediately to rectify the situation, and find an appropriate residential placement for Ann in which she can reach her potential for a happy, independent, and productive life.
Legal aid agencies get millions in state funding, yet say they lack resources to represent DDS families
Tens of millions of dollars in taxpayer funds are distributed each year to nonprofit legal aid organizations in Massachusetts.
Yet, family members and guardians involved in disputes with the Department of Developmental Services (DDS) over issues such as the removal of their guardianships have frequently expressed frustration to us that they could not get help from those legal aid agencies.
In two recent instances, legal aid agencies told us they didn’t have the resources to represent a woman with an intellectual disability who was involuntarily placed under the guardianship of an organization funded by DDS. The woman wants a long-time friend and former care giver to be her guardian.
Yet, both agencies provide representation to persons with disabilities, according to their mission statements or online descriptions of them.
In a third case, a legal aid organization executive initially expressed interest in representing the woman, but later backed away for unclear reasons.
Despite that, all three of those agencies receive millions of dollars a year, indirectly passed through to them from taxpayers, and all appeared to be in strong financial condition, according to their IRS tax filings. Their executives receive comfortable salaries and got raises in the past year.
In a fourth case, as we reported, a legal aid organization – the Massachusetts Access to Justice Commission — was unable even to respond, due to a lack of “authority and expertise,” to our questions about the rules for advocating in court for DDS families, according to its director.
That organization actually has no budget, according to an official with the Supreme Judicial Court, which oversees it. Yet the organization advertises its mission as “providing and improving access to justice for those unable to afford counsel.”
Following the money to legal aid agencies
We examined IRS tax filings known as Form 990s for the three nonprofit legal aid organizations that declined to help the woman in the guardianship dispute. Those tax forms are publicly available on ProPublica’s Nonprofit Explorer web site.
The tax forms we reviewed were for the Disability Law Center (DLC), South Coastal Counties Legal Services (SCCLS), and the Center for Public Representation (CPR).
We also examined the tax filings of the Massachusetts Legal Assistance Corporation (MLAC), which appears to be a pass-through organization of taxpayer funding to other nonprofits that advertise themselves as providing free legal assistance to people who are unable to afford expensive legal representation. We found, in fact, that the MLAC provides millions of dollars annually to the DLC, SCCLS, and the CPR.
The MLAC bills itself on its website as “the largest funding source for civil legal aid organizations in Massachusetts.” In fact, as we found, it is actually the state that is the largest source of that funding.
Pass-through agency
In Fiscal 2024, the MLAC passed through more than $70 million in funding to legal aid organizations in the state, a 23% increase from the year before. Those organizations, as noted, included the DLC, SCCLS, and the CPR, which received a total of $11.8 million from the MLAC that year.
In addition, the MLAC pays the salary of the director of the Massachusetts Access to Justice Commission, the organization mentioned above that has no separate budget.
So where does the MLAC’s funding actually come from?
According to its Fiscal Year 2024 Form 990, the MLAC received $81 million in total revenues that year, a 25% increase over the $65 million in revenues it received in Fiscal Year 2023.
Of that $81 million, the MLAC was appropriated $49 million under the Fiscal 2024 state budget “to provide legal representation for indigent or otherwise disadvantaged residents of the commonwealth.” So state taxpayers appear to have provided more than 60% of the MLAC’s funding that year.
The MLAC also receives revenue generated by the IOLTA program, which requires lawyers and law firms to establish interest-bearing accounts for client deposits.
As noted, we found that millions of dollars in state funding was passed through by the MLAC to the legal aid organizations we had contacted.
The Disability Law Center (DLC)
In Fiscal 2024, the DLC received $1.3 million from the MLAC, an amount roughly 30% of the DLC’s total revenues that year. The DLC’s mission, as stated in its 2024 tax filing, is:
To provide legal advocacy on disability issues that promote the fundamental rights of all people with disabilities to participate fully and equally in the social and economic life of Massachusetts.
In November, however, the DLC stated that it doesn’t handle guardianship cases due to its “very limited resources.” We had asked for the organization’s help in representing the woman who was fighting an unwanted guardianship.
The DLC’s Form 990 for the year ending September 30, 2024, showed the organization had net assets totaling $2.4 million, meaning their assets exceeded their liabilities by that amount. Moreover, their net assets increased by $154,000 that year, meaning they enjoyed a surplus of revenues over expenses of that amount.
Those are signs of strong financial health for the DLC, although that information alone doesn’t indicate whether the organization is capable of representing more clients. But the DLC was able to give its top four executives 5.8% raises in Fiscal 2024, bringing their average compensation to roughly $230,000.
The Center for Public Representation
The CPR received $3.3 million in revenues in Fiscal 2024, which was up 200% from its revenues in the prior year, according to its Fiscal 2024 Form 990.
The organization stated on its tax form that its mission was to provide “legal assistance, counsel, and representation to institutionalized, low-income individuals with mental illness or other disabilities at no charge.” But, as noted, the CPR did not ultimately agree to represent the woman who was seeking to end an involuntary guardianship.
Of the CPR’s $3.3 million in revenues in Fiscal 2024, some $734,000 came from the MLAC that year.
That year, the CPR’s net assets were a positive $14.3 million, a figure that was up $600,000 from the prior year. The organization’s top four executives received an average of $235,000 in compensation In Fiscal 2024, up an average of 16% from the prior fiscal year.
South Coastal Counties Legal Services
Out of its $13.8 million in total revenues in in Fiscal 2023, the SCCLS received $9.8 million from the MLAC, according to the tax forms of both organizations. Thus, over 70% of the SCCLS’s total revenues came from the MLAC that year.
The SCCLS’s tax form for the year ending December 31, 2023, shows that the organization’s net assets that year were $15.4 million, up 31% from the year before. That amounted to an increase of $3.7 million, which equates to a surplus in revenues to expenses that year of that same amount.
The SCCLS stated in its tax form that its mission was “to achieve equal justice for the poor and disadvantaged through community-based legal advocacy.”
Yet, when we asked the SCCLS about providing legal representation for the woman fighting her unwanted guardianship, an intake paralegal informed us that, “Unfortunately, at this time we are unable to provide assistance with guardianship matters due to capacity issues.”
The top four executives with SCCLS received 10% increases in compensation over the previous year, bringing their average compensation to $161,000. This number may actually be low because the SCCLS tax form for the year ending December 31, 2023, states that the executive director worked only two months that year and yet received $167,600 in compensation.
There seems to be a pattern here. Each of these organizations has a noble-sounding mission that would appear to promise legal help to desperate family members and guardians of people in the DDS system. Yet, none of the organizations would deliver on that promise to the woman we inquired about.
The lack-of-resources excuse seems to ring a bit hollow given those organizations each receive millions of dollars in state funding and appear to have enough money to pay handsome salaries to their executives and to maintain strong financial viability.
Money doesn’t seem to be an issue with legal aid organizations in Massachusetts. We would hope they would dedicate themselves to their stated missions rather than just saying the right things.
COFAR blog 