Families Endure Long Wait for Care

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    NEWSLETTERS

    Connecticut is fast running out of money for a residential program that many families with intellectually disabled children have relied on for years.  Families are concerned about where their children will live and who will take care of them as they grow older.

      The Galbick family of Bristol are concerned about living arrangements for their 27-year-old daughter, Sarah.  According to her parents, Sarah has been diagnosed as autistic with pervasive developmental delays and psychiatric issues.
     
    Recently, Maria Galbick walked from her home’s kitchen to the living room and noticed her second floor window was open.  Sarah was nowhere to be found.
     
    "I figured she would have been on the ground and she wasn't," Galbick said.
     
    The family found Sarah huddled near a power pole a few blocks away.
     
    "We got her to the hospital.  She had broken her hip, cut the ball of the hip joint right in half and had three other fractures in her pelvic area," Galbick said.
     
    Galbick and her husband, Mike, rely on family members to help watch Sarah while they work.  The Galbick family receives some state assistance for Sarah, but Maria said Sarah should live in an apartment or a group home with round-the-clock expert care.
     
    So far their requests have been denied.
     
    "We have been told many times that there is no funding," Galbick said.  "There's no more residential funding."
     
    Space is also limited.
     
    The Department of Developmental Services reports approximately 600 individuals are on a waiting list for residential services.
     
    "If you talk to some of those families they think they ought to be first in line and on any given day I'm sure I'd agree with them, but we get to them as we have the resources to do that," said DDS commissioner Dr. Terrence Macy.
     
    Close to 5300 people with intellectual disabilities in Connecticut receive residential support from state-funded providers and 3500 of them live in group homes.
    DDS estimates it pays up to $311,000 a year per resident in state-run homes and $132,000 per resident in privately-operated homes .  
     
    Group homes typically house three to six residents.  Many of the residents live independently and have jobs, but are cared for by contracted providers.
     
    The Arc of the Farmington Valley runs several group homes. 
     
    "I get calls about what's available and you know I'm sorry to tell them there isn't a whole lot available," said director Stephen Morris.
     
    The state also sends some individuals who require advanced care to out-of-state facilities.  But that can be a risky decision.  The Troubleshooters previously reported on a Connecticut resident with receiving care at an institute in Florida.  Hidden video captured by an employee showed the man being repeatedly punched and elbowed by his caregivers.  The two workers were fired and eventually arrested.  They've yet to make a plea and are now awaiting trial.
     
    Macy said the DDS will make a decision soon regarding its ten residents currently in Florida.
     
    "We're planning to bring in a very orderly fashion at least six folks back," Macy said.
     
    However, James McGaughey of the Office of Protection and Advocacy for Persons with Disabilities said Connecticut must be willing to invest in more individualized programs.
     
    "You can't just wave a wand, move them all back to Connecticut and then everything's fine," McGaughey said.  "There has to be a pretty intensive program development and I don't see that that's being planned."
     
    Macy acknowledges the current residential system is not sustainable.
     
    "Wait list for residential is one of our top priorities," Macy said.  "We have to look and see what other systems can we develop that will be responsive but certainly not cost as much as they are."
     
    The DDS has a five year plan that addresses many of the families' concerns.
     
    'We've got to meet families earlier in life and help them have more supports in their family," Macy said.  "People can't wait for group homes."
     
    But more people with intellectual disabilities age out of school each year.
     
    "What's there future?  Where are they gonna live?  Will there be supports to help them work and to live independently?" McGaughey said.
     
    Connecticut spends more per resident than all northeastern states except New York, but DDS faces an uphill battle if the Medicaid dollars it's relied on for years aren't there in the future.
     
     
     

    Families Endure Long Wait for Care

    [HAR] Families Endure Long Wait for Care
    Families desperate for help are running into long wait times.