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.