Advocacy Efforts Lead to Developmental Services Placement

Hartford – The Intellectual and Developmental Disabilities (I/DD) Caucus, the first such state-level caucus in the nation, has been holding advocacy and informational meetings regularly over the past year. The focus of the caucus is to eliminate the waiting list for state services and as result of the caucus efforts a placement has finally been made said State Representative Jay Case, co-founder of the I/DD caucus.

“The 60 members in the I/DD caucus share a common goal to help this specific cohort, we all want to connect state resources to those in need,” explained Rep. Case, “I have seen many legislative efforts, such as our present budget debacle, failed due to partisanship and I commend the caucus efforts in overcoming that stigma and work towards eliminating the waiting list.”

The most recent meeting of the caucus occurred on October 29th at the Legislative Office Building in Hartford. The meeting consisted of a presentation from the Office of Fiscal Analysis regarding funding for support services, such as day programs, employment and housing. It is evident that budget constraints are severely limiting the availability of state programs thus creating a backlog of the waiting list. At this meeting, members of the public were invited to testify to provide personal accounts of how this backlog is affecting them.

Among those who testified was Cheshire resident Sue Bastien, 65, who outlined a heart wrenching narrative about her 34 year old son, Patrick, who is quadriplegic, blind, and intellectually disabled in addition to having numerous significant medical issues including a trach (artificial airway) and feeding tube. Ms. Bastien, a single adoptive mother, discussed the high level of physical and medical care that is needed for Patrick in comparison to what was being provided to him at home. Ms. Bastien explained that due to Patrick’s medical needs, nursing care must be provided around-the-clock with an awake person at all times. She stated that he was not being provided with the amount of nursing care required to provide for him safely at home and needed a DDS residential placement. Like so many others on the DDS residential wait list, Patrick had been waiting years for a placement.

“Patrick has been on the wait list since High School…as of right now Patrick only has 14 hours a week of nursing,” stated Ms. Bastien while testifying before the caucus. “This means I am in charge of his care for 154 hours a week. I only get to sleep two to four hours a night.” She stated that while she slept, no one was awake to monitor Patrick’s airway, and she feared he could even die while she slept if his airway became blocked.

As a result of collaborative efforts of the I/DD caucus and other advocacy groups including the Arc CT and CT DDS Families First, Patrick received an interim placement on November 5th in the Pulmonary Stepdown Unit at the Hospital for Special Care in New Britain.

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