COFAR blog

Contrary to the assessment of officials with the Department of Developmental Services (DDS), a University of Massachusetts Medical School official has determined that a disabled woman should not be considered for an independent living arrangement.

In a decision dated July 29, the Medical School, which is under contract to the state’s MassHealth program, denied Ann Macdonald’s application for eligibility for a “Moving Forward Plan – Community Living (MFP-CL) waiver,” stating that Ann “cannot be safely served in the community.”

DDS officials have indicated, however, that they do believe Ann, who has cerebral palsy, is capable of living successfully in the community. Also, a psychiatrist concluded last year that Ann, 23, has normal intellectual functioning and “has demonstrated remarkable functional independence.”

Ann was placed in a DDS-funded group home when she turned 22, after having lived since she was 16 at the Pappas Rehabilitation Hospital. She wants to live independently, and said she intends to appeal the UMass/Mass Health determination.

Ann Macdonald

We have previously reported that Ann has been living for the past year in the Stoughton group home, which is run by Eliot Community Human Services, a corporate residential provider to DDS.

Ann came to the U.S. from China when she was 16. Cerebral palsy is 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.

Denial of eligibility based on cursory review

Ann said a UMass waiver unit nurse interviewed her for only about 15 minutes in the middle of June regarding her application for the MFP-CL waiver program. Present during the interview was Janette Packard, a Registered Nurse who is a friend and advocate for Ann, and a DDS official who has been advocating for Ann and supporting her application.

In the July 29 decision, the UMass Medical School stated that Ann “cannot be safely served in the community.” No further reasoning or specifications were provided in the one-page decision.

Ann and Janette said the UMass nurse expressed a concern to them about two factors that she said posed a problem for acceptance of Ann’s application. One concern was that an IQ test had allegedly shown in 2021 that Ann had an Intellectual Disability. The second was that because Ann needs help in getting out of bed, she couldn’t safely evacuate the premises in an emergency if she were living on her own.

Ann and her advocates dispute the legitimacy of both of those concerns.

Previous IQ test did not take into account language difference

In a draft letter of appeal, Ann maintained that the previous IQ test was administered just after she had arrived in the U.S. from China, and that she was just learning English at the time. Also, she said she had not received any formal education in China.

Ann said she is planning to take a new IQ test, which she believes will result in a markedly different result than the first.

As noted, a psychiatrist concluded last year that Ann has normal intellectual functioning. The Boston-based psychiatrist, Kaveh 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.

In a recent email, a DDS official noted to Ann that, “We all agree that your IQ is much higher than that test reported and that is why I think a new test will help to show people who don’t know you personally that you are more than capable.”

Evacuation concern unfounded

Ann and her advocates also disagree with the waiver unit nurse’s statement that Ann’s need for help in evacuating a residence during an emergency is a reason to deny her waiver transfer. “I believe I have a right to accept risks,” Ann stated in her appeal letter. “Living in my own apartment matters deeply to me. I believe with the right technology and support, I can manage the risks.”

Ann stated that she hopes to find an apartment with sprinklers and other fire safety features, and that if needed, she can work with the fire department to create a safety plan. She also noted that DDS has found a mechanical lift that she can use by herself to get out of bed. She is currently being trained in using it.

It is unfortunate that a single person, who may be uninformed, has authority under current state regulations to make decisions that can disrupt the life of an individual under state care, and stymie their potential. A determination as important as the eligibility of a client for independent living should be made by a panel of clinical and medical experts, not a single nurse.

In this case, DDS has noted the importance of honoring Ann’s wishes and aspirations for an independent life. The UMass decision in this case runs counter to DDS’s own policy of encouraging independent living for those who desire it and can benefit from it. We hope Ann’s appeal succeeds.

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.