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A mother’s lonely battle for appropriate care for her son

Valerie Loveland has felt as though she has had to fight alone to protect her son from indifferent care and even abuse in the Department of Developmental Services (DDS) system.

Her decisions were questioned, she says, not only by the staff in her son’s previous group home in Cotuit, but by DDS officials and even the DDS-paid co-guardian for him. 

At times she has feared that her own co-guardianship of her son might be taken away. (Although she wants her son’s story told here, she requested that his name not be used.)

In addition to other issues she has had to deal with, the state’s response to alleged sexual abuse of her son in March of this year in the group home seems to have been shrouded in secrecy.

Valerie Loveland

Even as co-guardian, she has not been allowed to view the complaint filed in the matter. She has been told only that her son was allegedly sexually abused by a group home staff member, but not what happened.

Tide may have turned

The good news is that in the past few weeks, the tide seems to have turned in her son’s favor.

Although Valerie was not able to get her son into a state-operated group home, as she had hoped, the May Institute did place him earlier this month in a new residence, also in Cotuit. And she said the new group home staff is making an effort to follow her requests to improve her son’s diet, which she said is linked both to his health and his behavior. The staff are also carrying out his occupational therapy plan.

For Valerie, it has all been about introducing common sense to her son’s care. “Maybe we should change what he’s getting to eat,” she said, citing an example. “That might actually save the state money on doctors visits, damage to the residence etc. That’s why I’ve been in their face.” 

But as is so often the case, common sense does not prevail in the DDS system. Valerie’s case demonstrates how family members in the system frequently find themselves pitted against providers, clinicians, probate court judges, and bureaucrats. The family members’ concerns and wishes for their loved ones are too often disregarded or overridden.

Valerie’s son, who is 23, has an intellectual disability, is non-verbal, and needs 24-hour care. He has now been a resident for the past five years in three separate group homes on Cape Cod run by the May Institute.

Valerie said DDS had 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 is an attorney who is paid by DDS and who has other wards as well. 

She said there had been problems in the previous Cotuit-based group home with cleanliness and thefts of her son’s electronic devices that help him communicate. In March, her son was allegedly sexually abused by a staff member of the group home. The incident was apparently reported to the Disabled Persons Protection Commission (DPPC) by another staff member.

Valerie has been told that DPPC is still investigating as are police. Her request to DPPC for a copy of the written complaint in the case was denied because the investigation is still underway. 

Son’s care has taken a financial toll

After the alleged assault, Valerie removed her son from that group home and cared for him at home. He was placed in the new May Institute group home in Cotuit on June 19.

Valerie, who lives in Chatham, estimates that it has cost her thousands of dollars in lost income to care for her son at home and drive him each day to his day program in Mashpee.

Valerie works in grocery delivery and part-time in aromatherapy, and is working for a college degree in alternative medicine. She said the DDS-paid co-guardian has largely been uninvolved in her son’s physical care, but criticized her decision to remove her son from the group home in which he was allegedly abused.

She 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 2 or 3 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. Even private investigators, including one hired by the state Department of Revenue, haven’t been able to find him.

May Institute executives well compensated

Despite her tenuous financial situation, Valerie has had to deal with a system dominated by well-paid corporate executives and powerful state officials. The May Institute’s Fiscal Year 2019 tax filing with the IRS listed a dozen executives of the nonprofit organization as having received more than $100,000 each in salary and other compensation that year.

That list was topped by May Institute President and CEO Lauren Solotar, who received almost $477,000 in total compensation, followed by the COO, who received close to $331,000. Five other executives made more than $200,000 each.

COFAR President Thomas J. Frain maintained that with compensation levels that high, the May Institute’s executives should be held accountable for ensuring that all of its clients receive adequate and appropriate care.

Instead, Valerie said it is only now that she feels the organization understands and is responding to  her son’s needs.

Saw diet as cause of problems

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. She said the group home tried to bill her for the expenses; but, as his Social Security representative payee, she argued that the staff needed to try to understand his behavior.

Valerie maintained 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.

Until recently, there was resistance to her efforts, even from the other co-guardian. As late as May 31, the other co-guardian stated to her in an email: “Instituting a diet change for anyone is a major step. Especially if the reason is not medically required.”

Prior to her son’s placement in his new group home, the May Institute residential director for Cape Cod wrote to Valerie on June 2, saying the provider would not be able to meet her dietary requirements for her son.

That has lately changed, Valerie said. The new group home staff appear to be making an effort to follow those requirements.

Pushback on other efforts to protect son

Valerie said that over the past year, she encountered pushback from the provider, the co-guardian, and DDS to other efforts she was making to protect her son. Those included her initial efforts to remove her son from the first group home, even after the abuse allegation surfaced.

Valerie said she asked DDS several times after learning of the March abuse allegation about moving her son to another group home; but the area office said nothing was available due to the COVID crisis.  As a result, she said, she took her son home with her.

In a May 25 email, the DDS-paid co-guardian stated, “I trust the May Institute and its staff to be working for the best for (her 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, the co-guardian said he continued to “fully object to his (her son’s) removal from May until a response from DDS is obtained.”

Valerie claimed that as recently as a month ago, the co-guardian threatened in group meetings with DDS and the provider to have her removed as co-guardian. “He said he would take me to court to have me removed,” she said. She added that during those meetings, “no one from DDS or May said a word” in response.

Valerie said the co-guardian finally relented regarding removing her son from the first group home, and earlier this month approved his move to the new residence.

Denied use of bathroom

When the May Institute finally suggested the new group home for her son, Valerie took on the task of easing the transition for him to the new residence. She drove him to the new residence on May 26 to help him get acquainted with it and with the residents and staff.

But she herself wasn’t allowed inside, even to use the bathroom after the hour-long drive from her home in Chatham.

The reason given for denying her entry to the residence was the COVID crisis. But both she and her son were vaccinated, and her son was allowed inside even without a mask.

 “I didn’t understand why I couldn’t run in and use the bathroom,” she said. “I wasn’t asking to stay inside. I was asking for toilet facilities. It seemed unreasonable to me.”

When Valerie later wrote to May Institute officials to complain, the May institute residential director responded that, “At this time, indoor visitation is not approved under state guidelines.” But that was not the case according to the DDS guidance, dated March 19, which was then in effect.

The DDS visitation guidance gave the providers discretion regarding indoor visits, stating that any restrictions should not be arbitrary. COFAR reported in May that many DDS group home providers were continuing to impose highly restrictive visitation requirements on family members even if all of the residents had been vaccinated.  

Since her son moved into the new group home, Valerie said the residential staff has allowed her inside.

Valerie said she is hopeful that a new era of common sense-based care has begun for her son in his new group home. But she said she is mindful of the difficulties she has faced and the long road she has traveled to get him to this point.

She also recognizes that although the situation today for her son appears better than it was a few months or even weeks ago, that could change.

“I think it’s important for people to understand this type of situation isn’t a ‘one and done’ for a complex kid like my son,” she wrote to us. “His being nonverbal has been a big challenge for him and staff. I’ve been the bridge. I won’t always be here. I keep trying to figure that part out…”

  1. Anonymous
    June 29, 2021 at 10:24 am

    The direct staff are not getting paid enough

    Like

    • Anonymous2
      June 29, 2021 at 3:16 pm

      Staff pay has nothing to do with this. It is not the cause of the problems and it is not the solution. Paying staff more does not make them professionals, and does not impart the skills needed for the work they are doing.

      The abuser in this post would still be an abuser if his pay were doubled, because he’s an abuser.

      On the other hand, the executives getting the big salaries ought to be taking steps to prevent these incidents from happening in the first place. But we keep hearing these stories that are likely only the tip of the iceberg.

      Thank you to COFAR for your continued vigilance.

      Like

    • Valerie Loveland
      June 30, 2021 at 4:22 pm

      You are correct. I fought for the staff to get higher pay. I spoke directly to the director of southeastern Massachusetts. “You cannot afford to loose anymore good help to make room the #%!?* that did this to my son”.

      The last meeting I had with them he stated “we are giving hero bonuses to current staff, we are giving hiring bonuses and referral bonuses”
      They’re trying. #paymatters
      #paydirectcareworkers #livingwages #speakup #askforit #commonsense

      Like

  2. Anonymous
    June 29, 2021 at 12:37 pm

    As a previous employee of this provider, I can attest to the fact that this type of situation occurs at higher rates than are reported. The administrative team at The May Institute does not listen to the report of suspected abuse of their clients and will do anything in their power to cover these stories up. Thankfully, this individual has a strong advocate in their mother. Not every client being provided “care” is as lucky, and unfortunately, the individuals who do not have the skill to communicate effectively are often the ones who are targeted for abuse. This is an epidemic. This is the most vulnerable population of people in this country and the system is allowing for the mistreatment of them for personal financial gains. The department needs to enforce their own policies instead of boasting about them. Positive Behavior Supports and Trauma Informed Care are touted as the methods in which staff use, however, there is hardly sufficient (if any) training and follow-up for the staff regarding these methods. Something needs to change.

    Like

    • Valerie Loveland
      June 30, 2021 at 4:31 pm

      I couldn’t agree more! The staff turnover is insane. They have no idea what occupational therapy is, or why I would even have advocated for it. I had a lot of pushback on this as well. As the article says “the tide is turning”.

      A note for others advocating for their loved ones. Do not give up! It works! Keep speaking up! I inundated them with studies about food, nutrition, occupational therapy, supplements, and why I was pushing so hard for them. I did a ton of research, picked the fights I knew would make the biggest difference.

      I also pushed for low toxins in every area I could. As a part time aromatherapist I’m very aware and educated on what toxins do to the body, brain, digestive tract. I had to hit them with hard facts.

      #dietworks #lowtox #lowtoxinfamily #nochemicalsplease #fightthefight #advocacyworks #occupationaltherapy #ot #adultsneedot #autismandot

      Like

  3. June 30, 2021 at 5:47 am

    The “co-guardian” is curious. That the State would involve itself in the life of a disabled individual is curious especially when it is costing them money. I assume that guardianship is a court procedure so how dose that State involve itself. Is this a common practice?

    3 houses in 5 years and being sexually abused. How is this “trauma informed care”? Each move is a trauma much less the change in staff. One of the many benefits of State operated facilities that are well run. As noted a major provider in the State of Oregon has closed and 3,000+ individuals need new homes. Hummmm Peace Tom Spellman

    Like

  4. Lynn Ann Royal
    July 1, 2021 at 5:00 pm

    Hi Valorie: You are humming my song. I too have solely been responsible for my son. After the CH 766 ended at his age 21, he began services through the community. First placement was great, possibly because I had been to court to secure the right program. It was great for the first few years, then the state took over the federally run program and my son suffered as a result of that for the next 20 years. One poorly run program after another. Move, move and more moves. Not what is best for a boy with TS and Autism.

    I too have been threatened with removal of my guardianship. Even taken to court. I too have found that at that conference table, we all go to for the ISP, it is ALWAYS 1 vote (for what is best for my child, that would be me) and 8 votes for what is best for the private Agency paid by DDS. They NEVER keep their word on anything and DDS does not oversee the ISP programs.

    I too discovered there is a conflict of interest when the co-guardian has links to DDS.

    Then, about 2010, I found my easy-going-lovable son unresponsive with no eye contact and no attention to me. He did not seem to recognize me. He had regressed into himself. He too is non-verbal and on the severe end of M.R.

    For the next year or more I pleaded with our (MA) state legislatures. It was always the same. “I’ll look into that” and no follow up ever came. Frustrated, in 2012-13 I sought legal help. Fourteen months later, my son was placed at the Wrentham Developmental Center (WDC) as a settlement through DDS.

    The happy ending is, that WDC is the right place for him and they have been marvelous. He makes a little progress each year and, now 7 years later, he is back to his own self again. I smile every time I leave after visit. He is truly content and accepted for who he is with stability and consistence of programming appropriate for him. He loves water and basketball. He does both regularly. Even went kayaking and horseback riding. I discovered he can ride a 3-wheel bike with a close eye on him.

    Please feel free to reach out to me if I can be of any assistance to you.

    In friendship,
    Lynn 508 480-0569

    Like

  5. Anonymous
    • Valerie Loveland
      July 6, 2021 at 4:33 pm

      Well now, this was/is an interesting read. It’s horrifying what a lawyer can and will do when left unchecked. I have nothing to gain being my son’s mother and advocate. Nothing at all…

      I got paid nothing when my son was home with me for 3 months. The Dds appointed lawyer continued to get paid for just pushing his pencil around and showing up at mtgs and going along with whatever the provider wants to do as the experts.

      I’ve had awful things said about me, from my son being an incest baby and that’s why he has autism, to them trying to say I have autism and he inherited it from me, and so on…

      The provider and lawyer have even had a difficult time accepting I was married for 10 yrs to his father, I’ve had legitimate income (after all the “she’s a stripper, prostitute, etc dogma has been flying around for over a decade now).

      It’s been a nightmare and still is. At least my son’s money is safe.

      Eventually they will have to face the consequences of their behaviors. No lie lasts forever

      Like

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