We are a statewide nonprofit organization established in 1983 that advocates on behalf persons with intellectual and other developmental disabilities, and on behalf of their families and guardians. 

From our November 12, 2020 Blog Post

DDS seeks to remove mother as co-guardian of her son after she saves his life

Cindy Alemesis’ son, Nicholas, nearly died in December 2018 after staff in his group home in Dracut failed to take him for a scheduled morning ultrasound appointment, which would have shown that his brain shunt was leaking spinal fluid.

Just hours after the scheduled time for the appointment, Cindy first noticed how ill Nick appeared.

Cindy was with Nick following an evening church service, and made sure he was taken to a hospital. There, doctors found that the shunt was leaking spinal fluid into his body, and that the fluid had begun to build up in his stomach. Cindy didn’t know at the time that the ultrasound appointment had been missed.

Nick got sepsis from the leaked fluid, and was in Mass. General Hospital for eight months, during which he underwent multiple brain operations and other procedures. Cindy was at his bedside for much of that time.

Since Nick’s recovery and release from the hospital in July 2019, Cindy has regularly complained that staff in the group home, run by LifeLinks, a provider to the Department of Developmental Services (DDS), have continued to miss medical and dental appointments for him.

But rather than addressing those concerns, DDS is now moving to remove Cindy as her son’s co-guardian, stating only in a court document filed last month that she has made decisions that were not in Nick’s best interest. The DDS filing in Middlesex Probate Court does not provide any specifics as to what decisions those might have been.

Read more on our blogsite here.

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Our Advocacy Guide

If you are feeling overwhelmed by the complexities of the Department of Developmental Services (DDS) system in Massachusetts, or if you simply want more information about matters relating to the care of your loved ones in the system, we hope our Advocacy Guide can help. In it, you will find both tips and advice on care and services, eligibility issues, Individual Support Plans, guardianship, and other issues.

COFAR constructed this guide as part of our mission of providing advocacy information and advice to families and guardians of those with intellectual and other developmental disabilities, wherever they may live.

As of March 2016, we have updated the Guide to reflect changes in DDS regulations, and have added new information on issues ranging from guardianship to getting SSI and Medicaid benefits.

You can access the updated Guide by  clicking here.  We welcome your feedback!            

COFAR is affiliated with The Wrentham Association, and nationally with VOR.