Family thanks DDS commissioner for referral of sister to the Wrentham Center
[Editor’s Note: We are reprinting a letter below that was written by Joan Norman, a sister of Ellen Gallagher. Ellen, who has an intellectual disability, had been living in a corporate, provider-run group home, which was moving to evict her because they admittedly couldn’t meet her needs.
Ellen has Alzheimer’s disease and limited mobility mainly due to limited vision issues and age. Joan describes her as “sweet and social,” but said she had been declining in the group home due the advancement of her disease and “sub-par medical and mental health care.”
In November, after advocacy on Ellen’s behalf by her family and members of COFAR, Department of Developmental Services (DDS) Commissioner Jane Ryder granted Ellen a rare admission to the Wrentham Developmental Center.
The number of residents at Wrentham and the Hogan Regional Center has been steadily declining for several years. That is because a succession of administrations has had a policy of declining to offer Wrentham or Hogan as residential options even when families ask for them.
We think Joan’s letter to Commissioner Ryder is an eloquent testimonial to the quality and importance of the care provided by state-run Intermediate Care Facilities (ICFs) such as the Wrentham and Hogan Centers.]
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Dear Commissioner Ryder,
This letter is to formally thank you for supporting our sister’s referral to the Wrentham Developmental Center (WDC) back in November.
As you might remember, Ellen Gallagher, a 55-year-old Down Syndrome woman on hospice, with advanced Alzheimer’s, was living in her group home’s family room due to losing the ability to walk or get to her 2nd floor bedroom for almost 4 months.
We fought hard to find the appropriate placement with 24/7 nursing care so that Ellen could live out her remaining time with dignity and proper medical and mental health services. She needs services that include continuity and onsite care, rather than visiting the ER, hospital stays and unnecessary tests when she has had minor issues such as dehydration.
Now that she has settled in at WDC and has spent 6 weeks there, we can confirm it is an amazing living environment where her medical needs are finally being met and she is safe. She now has a handicap accessible bathroom and there are appropriate safety measures to match her abilities and changing needs.
We realize there is a push to keep people out of ICFs like WDC, but for medically complex clients it should be an option and it should be offered willingly by DDS. Families should not have to fight so hard for the care they need. ICFs are not the institutions of the past.
In this case, WDC is an example of the type of culture that is needed in community-based homes where a client’s medical care doesn’t involve neglect, safety issues and unprepared front-line workers.
We suspect costs are a driving factor behind limiting ICF placements. If you look at costs in community-based homes, many medically complex people end up with unnecessary emergent care because they don’t have onsite nursing care. Caretakers (with little to no medical background) use ambulances and hospitals “to be safe” when issues arise. Or worse, many clients go without proper medical care when they need it.
In my sister’s situation, in one incident, she was so dehydrated she ended up in the hospital nearly unconscious for days after being left virtually alone with a COVID infection. The staff handed her over to us after her isolation period, and we took her directly to the ER. She never gained back her strength, and it began a downward spiral of physical and mental decline for her.
In theory, nursing staff should be available to coordinate client medical care in group homes, but that is not how it often works. This can result in sub-par care, but also higher costs for the state’s Medicaid program when emergent care and unnecessary hospitalizations are used in place of qualified medical workers who can properly assess and address medical issues properly.
We urge you to continue supporting families who are seeking placements in an ICF like Wrentham, particularly for medically complex clients. Quality 24/7 medical care is not available in community-based homes, or it is patched together at best. WDC can offer this type of care.
There is a federal regulation supporting the choice of an ICF: Individuals seeking care, and their families and guardians, should be given the choice of either institutional or home and community-based services. [42 C.F.R. § 441.302(d)]. We got our choice for Ellen, and we sincerely thank you for supporting that decision. Please consider supporting others as well.
Sincerely,
The family of Ellen Gallagher
COFAR blog 
I thank the family of Ellen Gallagher for your tenacity and for sending a thank you to Commissioner Ryder. I concur Wrentham and Hogan should be made available to those in need of the excellent care they do provide. I am thankful both Wrentham and Hogan are still opened and will continue to advocate to keep them opened and hopefully make others see these are not institutions of the past, but well-run facilities that provide the coordinated medical care our most vulnerable are in need of. I also say thank you to Commissioner Ryder for understanding Ellen needed that care. I ask Commissioner Ryder to continue to work with families/advocates that want and need that care for their loved ones. Until you walk in someone’s shoes you have no idea of what they go through. While you are advocating to get the care needed at the same time you are watching your loved one deteriorate because of lack of care, it is unbelievable painful and exhausting. I can only hope and pray that others are afforded the same opportunity. Congratulations to Ellens family and to the Commissioner Ryder for a good outcome!
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This is wonderful news for Ellen Gallagher and her family, and hopefully will be the start of a much needed trend. Thank you to Commissioner Ryder for doing the right thing in this instance, and thank you to the tireless fighters behind the scenes helping families and giving them hope. WDC is the best place for those with complex medical needs with it’s on ground hospital, dental clinic, school, gymnasium, heated pool, programs, cafe, and too many good things to mention. Most importantly though, the dedicated and well trained EMPLOYEES, who treat the residents with such respect and love.
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I want to thank the family of Ellen Gallagher for this excellent letter and for thinking of all of those who have been turned away from an opportunity to place our loved ones at the Wrentham Developmental Center.
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Why do people have to jump through hoops and red tape to get their loved ones placed in these facilities? Why should DDS have the control and be an obstacle of who goes there and not the facility?
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So relieved that Ellen Gallagher is safe and being well cared for. It is astounding to me that her admission to WDC had to be authorized by the Commissioner. Does the President of UMass need to personally screen and authorize each high school senior’s acceptance to public higher education?
This procedure in DDS fosters complicit disregard for the needs of our most vulnerable.
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Why does the DDS Commissioner need to authorize an admission to WDC?
Does the Chancellor of UMass screen and review, then accept or reject high school seniors’ applications for admission to higher education?
Mary ann ulevich
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Why does DDS have any authority over ICFs? They are not adult waiver housing. They are Medicaid-funded institutions for individuals with intellectual disability. And all that should be required is a need for active treatment and having Medicaid.
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Wonderful to hear a success story for the Gallagher family. I support both the Wrentham and Hogan placements for individuals that need this level of care. Ellen is fortunate to have her family support her along with Commissioner Ryder. Patty Garrity
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Good morning A morning thought All Individuals who are Disabled have a RIGHT by Law to a Person Centered Plan. The presentation of facts (argument) in this case should have been all that was needed if Ellen’s RIGHT had been acknowledged, because the Plan MUST BE FOLLOWED. Now why we do not use Person Centered Plans to get the care that our loved one need and REQUIRE is the puzzle. The RIGHT is there but demanding that the Person Centered Plan be followed is not. Thomas Spelman PS HI Patty
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Thank you to Joan and the Gallagher family for writing this poignant letter about Ellen’s struggles to receive good care. In the end, you as a family decided that Wrentham Developmental Center was the place that could provide the best care for Ellen, and thankfully she was able to be placed there and is doing really well. As we know, many families are not given this option for reasons that are antiquated (WDC is an institution, it is isolating,etc.), and it often takes intervention after many months of advocacy to get a much needed placement at an ICF like Wrentham or Hogan for your family member. Many people are never successful, and are forced to give up. COFAR members, and especially Wrentham family members, have always advocated for a continuum of care for our family members across a lifetime of needed services. If a group home worked for someone in their 40’s it may no longer be appropriate for them as they age, or develop Alzheimer’s (such as in Ellen’s case), or if they need increased medical care. Nursing homes have been found to be inappropriate for most individuals with intellectual disabilities (Rolland v. Celluci), and DDS lost that option a long time ago. So when residents in group homes struggle, what has been the solution? The provider says the placement is no longer appropriate and gives them notice to move out. But what are these residents offered? Another provider group home – perhaps in a place where the provider needs the income more that goes along with the resident. So the merry go round begins. Let’s offer these folks appropriate placements, and not make their lives more difficult, and their families lives full of stress and worry. Offer all options, DDS, including the Hogan Regional Center and the Wrentham Developmental Center.
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Thank you to Joan and the Gallagher family for writing this poignant letter about Ellen’s struggles to receive good care. In the end, you as a family decided that Wrentham Developmental Center was the place that could provide the best care for Ellen, and thankfully she was able to be placed there and is doing really well.
As we know, many families are not given this option for reasons that are antiquated (WDC is an institution, it is isolating ,etc.), and it often takes intervention after many months of advocacy to get a much needed placement at an ICF like Wrentham or Hogan for your family member. Many people are never successful, and are forced to give up.
COFAR members, and especially Wrentham family members, have always advocated for a continuum of care for our family members across a lifetime of needed services. If a group home worked for someone in their 40’s it may no longer be appropriate for them as they age, or develop Alzheimer’s (such as in Ellen’s case), or if they need increased medical care. Nursing homes have been found to be inappropriate for most individuals with intellectual disabilities (Rolland v. Cellucci), and DDS lost that option a long time ago.
So when residents in group homes struggle, what has been the solution? The provider says the placement is no longer appropriate and gives them notice to move out. But what are these residents offered? Another provider group home – perhaps in a place where the provider needs the income more that goes along with the resident. So the merry-go-round begins. Let’s offer these folks appropriate placements, and not make their lives more difficult, and their families lives full of stress and worry. Offer all options, DDS, including the Hogan Regional Center and the Wrentham Developmental Center.
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