Home > Uncategorized > Mother says ‘no’ to DDS offer to drop effort to remove her as son’s co-guardian if she relinquishes all decision making authority

Mother says ‘no’ to DDS offer to drop effort to remove her as son’s co-guardian if she relinquishes all decision making authority

The Department of Developmental Services has offered to drop a two-year-long effort in probate court to remove Cindy Alemesis as co-guardian of her son Nick, whose life she saved in 2018.

But Cindy said that as part of a proposal made last week to settle the case, the Department stated that all medical and residential decision making authority concerning her son would be given to a new DDS-paid co-guardian.

In an interview, Cindy said she is encouraged that the Department is at least now open to her remaining as Nick’s co-guardian. However, she said, she will not accept an arrangement under which she would lose all medical and residential decision making authority in Nick’s care.

“I’m not handing that to them,” Cindy said. “I’ve fought for proper care for Nick and for his rights for his entire life.”

Nick and Cindy Alemesis

In 2018, Nick nearly died after staff in his group home in Dracut failed to take him for a scheduled ultrasound appointment, which would have shown that his brain shunt was leaking spinal fluid.

A few hours later, Cindy was the first to notice that Nick was ill, and made sure he was taken to a hospital. There, doctors found that the shunt was leaking spinal fluid into his body, and that Nick had developed sepsis from it.

Nick spent eight months at Mass. General Hospital, during which he underwent multiple brain operations and other procedures. Cindy was at his bedside for much of that time.

Despite Cindy’s actions in 2018, DDS petitioned the Middlesex County Probate Court for unspecified reasons in October 2020 to remove Cindy as Nick’s co-guardian.

 

Co-guardianship could still be “suspended” for vague reasons

The new DDS proposal last week to drop the effort to remove Cindy’s co-guardianship also includes a condition that her co-guardianship could still be “suspended” if she was found to be “unwilling to make (Nick’s) health and welfare the ultimate goal of (her) co-guardianship.” The proposal doesn’t explain who would make that determination or how it would be made.

The proposal further states that the DDS co-guardian would have to agree to “the dissemination of protected health information or other personal information about (Nick) with third parties uninvolved with (his) medical care.”

That condition sounds like an effort to prevent Cindy from providing information about Nick’s care or services to an organization such as COFAR. Presumably, if an incident such as a leaking shunt were to happen again to Nick, Cindy would be prohibited, under DDS’s proposed agreement, from saying anything publicly about the matter unless the DDS co-guardian were to allow it.

Cindy alleges poor care and decision making by DDS and provider

Cindy maintained that since Nick’s 2018 hospitalization, DDS and Nick’s residential provider, Incompass Human Services, continued to make poor decisions in providing medical care and services to him. She noted that DDS recently sent Nick back to a day program operated by Incompass, causing Nick to act aggressively and apparently injure himself.

Cindy said that in recent months, Nick was repeatedly injured in the group home, and was afraid of the staff there. The same thing then happened in the day program, she said, because many of the staff were the same.

Following those repeated injuries, Nick was moved out of the group home in September, and is currently living in a respite facility in Saugus.

Cindy said Nick’s former DDS-paid co-guardan, who had imposed a temporary ban this summer on Cindy’s visits and phone contact with Nick, has resigned. But Cindy said she isn’t hopeful the situation will improve with the appointment of a new DDS co-guardian.

The new DDS co-guardianship proposal contains the following stipulations:

  • Eva Toscano, who appears to be a program manager with the Department of Mental Health, would be appointed Nick’s new DDS-paid co-guardian. Toscano would have sole medical and residential decision making authority regarding Nick’s care.
  • Cindy would be informed beforehand of Toscano’s residential decisions “when feasible,” and would be informed beforehand of Toscano’s medical decisions unless there was an emergency.

It would appear that under this stipulaton, Nick could be moved from one residence to another without Cindy being informed in advance. In all cases, he could be moved without her consent.

  • Cindy would have to give 48 hours notice to residential staff prior to visiting her son.
  • Cindy would be allowed phone calls with Nick, but only if it were determined to be “not detrimental to (Nick’s) behavior.”

The proposal doesn’t specify who would make that determination as to whether the phone calls were detrimental, but it would appear to be up to the DDS co-guardian. Cindy says Nick has acted out in the past because he objects to a rule cutting off his conversations after 10 minutes.

  • Cindy could continue to take Nick to his church, which he has attended for the past 25 years, but the DDS co-guardian could cut off the visits if she decided they were “detrimental to (Nick’s) behavior or health.”

Cindy would not be allowed to make that determination whether attending church was detrimental to Nick.

Both Cindy and Nick’s pastor, the Reverend Keith Phemister, have stated that Nick has never caused problems in his church. Yet Cindy said Nick has been restricted for months by DDS and by providers from attending church services and functions, even online.

In an interview in April, Phemister sad Nick had not been able to attend the church for the past month. “I know he looks forward to coming to church,” he said. It’s his lifeline.”

  • Cindy’s co-guardianship could be “suspended” if she was found to be “unwilling to make (Nick’s) health and welfare the ultimate goal of (her) co-guardianship.”

It seems to us that stipulating that a guardian can no longer make residential or medical decisions or give out medical information about their ward essentially amounts to removing their guardianship. At the very least, DDS’s proposed resolution of this case would ensure continuing disputes between Cindy and the DDS co-guardian. We fully understand why Cindy does not want to accept a proposal like that.

In November 2021, Dr. Zaheer Ahmed, Nick’s primary care physician, wrote a letter to the probate court, opposing DDS’s bid to remove Cindy as Nick’s co-guardian.  In his letter, Ahmed maintained that Cindy had always acted in Nick’s best interest.

We agree with Dr. Ahmed, and believe Cindy should keep her medical and residential decision making authority.

  1. Anonymous
    October 27, 2022 at 10:30 am

    So basically this Mother would have no rights over her own child! Never trust this organization.

    Like

  2. Maureen Shea
    October 27, 2022 at 11:01 am

    NO one cares for any child more than most family and especially the Mom. No one has the history, and put in the hardest work ever than Mom. Do NOT ever trust a loved ones medical care to anyone other than a Mom. Deceit, lies and rumors supported by unethical lawyers and unethical organizations who get paid huge money 💰 is not a hell you want to go down.
    You’ll lose and your loved one will be unsafe or worse .

    Like

  3. Anonymous
    October 27, 2022 at 11:21 am

    I am Nick‘s grandmother Nancy Cowan Murphy and I believe that taking Cindy off of anything would be totally unfair and detrimental for the safety of Nick. She has always been there for him and always will be since the day he was born. When he was in Mass General for eight months she was there every day sometimes for days on end. If it weren’t for her Nick would be dead right now because she was the one that realize he needed to be brought to the hospital for treatment immediately which she did. When this happened he was sent to Mass General where they literally saved his life. I totally object to any of this taking away co-guardianship and will standby her 100 percent. You can contact me at any time for any information I will be willing to talk to anyone about this situation. You can reach me at 978-821-0858 thank you very much and God bless you all in making the right decisions for Nick

    Like

  4. Sara
    October 27, 2022 at 11:24 am

    I would never relinquish such authority to them. It’s obvious that they don’t like the Mom being involved in her sons care. Keep up the good fight for your son you know him best.

    Like

  5. Marion Julian
    October 27, 2022 at 11:46 am

    If there has to be a co-guardian why not approach it parent to parent ( a parent who’s child is getting DDS residential services as well) don’t nullify Cindys guardianship rights but having a true team effort of the co-guardians for the benefit of Nick!
    This may sound simple but I think the outcome would be a positive for all.

    Like

  6. Karen Faiola
    October 27, 2022 at 12:04 pm

    This is unacceptable! DDS has become a radical organization without accountability. DDS is violating basic human rights of people and families with special needs. I’m sure there are many out there who have experienced DDS’s quest for total control and in the process hurting the disabled community and they don’t care. The mother should fight to get rid of DDS as partial guardian of her son and change the agency he’s with. DDS has forgotten who they serve, they need to be reminded.

    Like

    • Maureen
      October 27, 2022 at 1:26 pm

      They police themselves also.
      Absolutely NO accountability to the health and safety of this vulnerable population .

      Like

  7. October 27, 2022 at 4:35 pm

    Guardianship without decision making ability is no guardianship at all. This is a ridiculous offer to Cindy. She needs to be a true legal guardian for her son.

    Like

  8. Kim Goudreau
    October 27, 2022 at 7:30 pm

    As someone who works in a group home, I struggle to understand why this happening to a mother who obviously loves and is very involved with her son.

    Like

  9. Anonymous
    October 29, 2022 at 2:36 pm

    This mother has never left her sons side and it’s a crime what the state of Massachusetts is doing to this family!! How can this happen? Who can help Cindy ? What can the public do ?

    Like

  10. Shawn V.
    October 30, 2022 at 4:33 pm

    I’ve know Cindy and her family for over 30 years and I’ve only seen a living mom who always took care of nick and he wasn’t always easy but she did it and saved his life !! This is an outrage !! SHAME ON DDS !!

    Like

  11. Steven R Tailor
    October 31, 2022 at 9:25 pm

    Praying For Cindy and Nick. This story is so sad all she did was find her son half dead and the state stands up for the staff even hides unreported car accidents. The agency should be closed down !!! It’s a nightmare what they are doing to her family. For years now. WHO PROTECTS THE INNOCENT

    Like

  12. Bright
    November 1, 2022 at 5:56 pm

    Mother will always be there for his son because he means a lot and they don’t have the right to hold him down because mother takes all the responsibility and she stay with him for 9month when everyone left, so know one can challenge the authorities because she’s helping his son in all ways justice will surely come.

    Like

  13. Anonymous
    November 3, 2022 at 8:37 am

    PRAYING FOR CINDY & NICK. HANG IN THERE !! NEVER GIVE UP ! WE LOVE U !! UR CHURCH FAMILY 🙏🙏🙏🙏💕

    Like

  14. Conrad Conrad
    November 3, 2022 at 9:30 am

    Don’t give up the fight! I’m behind you 100%. No more government overreach splitting up loving families!

    Like

  15. Linda Noel
    November 4, 2022 at 3:00 pm

    I have been following this story and still baffled by DDS procedures to eliminate Cindy’s medical authority. The way this reads is DDS is watching their butt because if they can do this to them, how many others are there. A full state level investigation on their practices should be mandatory. I applaud Cindy and her efforts to uncover the abuse physical mental and emotional they contribute to the patients and their families.

    Like

  16. Danny Mccarthy
    November 6, 2022 at 8:29 pm

    I am an Uncle to Nick and was at the hospital most of the time and all I saw was a mother taking care of her dying son the co guardian Donna from the state in 10 months never came not once. Cindy went threw so much nick was in ICU for 3 months. He was so sick he also had to learn how to walk again eat talk hold a cup. Cindy never left him. Its so sad the only thing Cindy ask for is BETTER CARE. nothing else. Also at the time of the hospital half the staff was in criminal court for stealing over 680 000 off same day program that nick went to and that is in charge of same group home. who’s helping who ? WHY WONT STATE FIRE STAFF INSTEAD OF ATTACKING THE MOTHER WHO ONLY WANTS BETTER CARE

    Like

  17. Kim Stanley
    November 6, 2022 at 8:30 pm

    Praying for cindy and nick. This is an OUTRAGE

    Like

  18. Anonymous
    November 7, 2022 at 10:12 pm

    Why can’t anyone do anything? This must be a nightmare on the family how can it go more public? This NEEDS TO STOP !! PRAYING

    Like

  19. Rosalie Hoey
    November 9, 2022 at 5:01 pm

    I wS Nick’s PCA before and I only saw Cindy being a very caring and loving mom to nick this is so sad to see. Praying for. Cindy and nick

    Like

  20. Steven Killington
    November 9, 2022 at 10:20 pm

    DONT GIVE UP CINDY !!! WE ARE PRAYING FOR U & NICK STAY STRONG !!! JUSTICE FOR NICK

    Like

  21. concerned citizen
    November 10, 2022 at 12:42 am

    This is so u fair to see how can the stayed get awY with this ??!!! SOMETHING NEEDS TO BE DONE FOR THIS LOVING MOTHER ENOUGH IS ENOUGH !@

    Like

  22. Linda Silver
    November 15, 2022 at 5:17 pm

    The state should be ashamed of themselves!! They let staff get away with so much. Their mistakes fall on the guardians !!! It’s not right. Where are nicks civil rights !!!! I haven’t seen him I’m church and he’s been there for 25 years !! He hasn’t seen no family in months. How can the state be such MONSTERS !!! HELP OUR SPECIAL NEEDS !! DONT GIVE UP CINDY !!

    Like

  23. Concerned Parent
    November 15, 2022 at 5:18 pm

    JUSTICE FOR NICK !!!! WAKE UP MASSACHUSETTS!!

    Like

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