Tuesday, November 11, 2014

Has Deinstitutionalization Failed?“


“Has Deinstitutionalization Failed?”

Deinstitutionalization

In the 1980’s, Senator John Chafee (R., RI) introduced legislation that would have defunded Medicaid Intermediate Care Facilities (ICFs). Since then, the push to de-institutionalize has gained momentum.  As of 2011, twelve states had no large ICFs; AL, AK, DC, HI, MI, MN, NH, NM, OR, RI, VT, WV; and three states had no ICF of any size; AK, MI, and OR.

Today, despite the objections of guardians and advocates, many states are closing or redefining their ICFs; forcing individuals from their homes and into community services or leaving them without services. Nationally, there are 317,000 individuals on waiting lists for Medicaid Waiver services.  There seems to be a direct correlation between deinstitutionalization and waiting list numbers.  Alabama requires capacity to grow by 69.3% to meet needs.  Alaska requires 50.3%, New Mexico requires 144.4%, and West Virginia requires 114.4% growth in capacity. 853,000 persons are living with caregivers age 60 or older.

Community Tragedies

 Community tragedies are widespread and now well-publicized. The stories are haunting and made all the more tragic and unacceptable given just how predictable they have become,” Tamie Hopp, VOR. 

 Georgia has aggressively deinstitutionalized and transitioned individuals from facilities to community  settings.  According to the Georgia Department of Behavioral Health & Developmental Disabilities “2014 Interim Quality Management Report,” published in August 2014, there have been 72 deaths, hundreds of hospitalizations, injuries, elopements, encounters with law enforcement, and alleged abuses among all constituencies.  Community developmental disability providers reported 1,443 deaths and critical incidents; 69% of all incidents during this report period.  These incidents occurred despite a federal court monitor placing a temporary halt on transitions.

An audit by Tennessee’s state comptroller and federal court monitor’s report tracking individuals transitioned from three of the state’s facilities found:  257 reports of abuse, neglect, and exploitation in 2013 (87 of those reports were validated by the state); delays in doctor recommended treatments and lack of adequate dental care; and an increase in deaths of persons formerly institutionalized (nearly doubled from 2009 to 2013).  Some former residents of institutions have landed in jail while others cannot be found. http://d.adroll.com/cm/r/outhttp://d.adroll.com/cm/f/outWhile the state saves millions of dollars each year by serving people outside institutions, officials at private agencies concede that a lack of adequate state funding has at times hampered their efforts to help people achieve the best quality of life,http://d.adroll.com/cm/l/outhttps://www.facebook.com/tr?id=146862628821049&cd%5bsegment_eid%5d=DSDEZNKWU5AALNVOZ4RZIQ&ev=NoScript” Anita Wadhwani, reporter.
In New Jersey, state facilities are being closed while individuals receiving care out of state are being forced to return to New Jersey or lose their funding.  The individuals being served out of state were allowed to receive services in other states because New Jersey had no facilities which could provide the services they required.  After the deaths of two state facility residents transferred to group homes, the New Jersey Legislature passed a bill creating a moratorium on the Return Home New Jersey Initiative but Governor Christie vetoed the measure.  Family groups have claimed that the state is bringing people back without having the services and group homes in place for their arrival. One young man has been jailed and hospitalized because the group homes he moved to were not able to handle his behaviors; he was thriving in the out of state facility where he lived and even worked part-time. 

Oklahoma has had seventeen deaths over a period of twenty-two months.  These individuals were either transferred or in the process of being transferred from two of the states ICFs.  State Senator Patrick Anderson has called for a review of these deaths to determine “whether the impending closure of the facilities and the residents' transition into community homes contributed to the deaths.”

“Has deinstitutionalization failed?”
At a recent Facilities Task Force Meeting, Senator James Anderson, Senate District 28, posed the question, “Has deinstitutionalization failed?” 

Yes, Senator Anderson, deinstitutionalization has failed.  The preceding examples are only part of the answer to that question.  There are numerous stories from across the nation illustrating the negative outcomes of deinstitutionalization.  These are just a few.    It has failed the displaced residents of the institutions they called home.  Individuals have the right to choose where to live and receive services; however, deinstitutionalization has eliminated that choice.  Deinstitutionalization has denied individuals the integrated, client-centered care they have received in these facilities.  Overall, it has attempted to put persons with intellectual and developmental disabilities into one category.  This “one size fits all” approach to caring for the intellectually and developmentally disabled affects each individual regardless of the severity of their disability. 

References


Larson, S.A., Salmi, P., Smith, D., Anderson, L. and Hewitt, A.S. (2013). Residential Services for Persons with Intellectual or Developmental Disabilities: Status and trends through 2011. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.





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