Pennsylvania is teetering on the brink of setting disability rights back 30 plus years. The Pennsylvania Legislature is currently considering Senate Bill 906. Senate Bill 906 is not forward thinking Legislation. It seeks to halt the closure of all state intellectual disability centers. In so doing, it supports the outdated notion that people with the most significant disabilities are people for whom an “everyday life” in community is simply impossible. This is so far from accurate!
My name is Jamie Ray-Leonetti and I am the Associate Director of Policy at the Institute on Disabilities at Temple University. I am also a person with a disability. I live in my own apartment that I share with my husband. He also has a disability. I work full time with professionals with and without disabilities. I earned a law degree from Temple University School of Law. I sing with the 270 voice, auditioned Philly Pops Festival Chorus. I am an active member of my community. My community does not have walls! I will not be satisfied until all of my brothers and sisters with disabilities can live without walls. With careful, individualized planning, and home and community-based services and supports, the community is boundless. The four walls of an institutions have no purpose but to limit. In 2020, we are better than that. We must be better than that.
I am privileged to work at Pennsylvania’s University Center for Excellence in Developmental Disabilities (UCEDD) Education, Research and Service. We are one of a network of 67 programs throughout the nation that are funded by the Administration on Intellectual and Developmental Disabilities within the US Department of Health and Human Services to conduct training, service, technical assistance, research and dissemination activities on behalf of people with developmental disabilities in this Commonwealth. The Institute has been Pennsylvania’s UCEDD since 1973.
Since 1999, the Institute on disabilities has collaborated with the PA Office of Developmental Programs (ODP) to conduct and analyze data from Independent Monitoring for Quality (IM4Q), a statewide initiative to assess the quality of life of people with intellectual disabilities and autism in PA. This initiative is part of a national effort called National Core Indictors, where 46 states participate. Through NCI state performance indicators have been developed and states measure their performance on these indicators.
In PA, data are collected form a representative sample of individuals living in a variety of settings including family homes; own homes, group homes (1-4, 5+), public intermediate care facilities for people with intellectual disabilities (ICF/IDD), private ICF/IDD and life sharing. The data are collected through interviews with individuals and families. Trained teams of individuals collect the interviews, each team including at least one person with a disability or family member. The data are collected by non-profit organizations who are free from conflicts of interest (meaning they do not provide waiver services). The Institute on Disabilities analyzes the data and reports issued for the statewide sample and for each of the 48 intellectual disability programs across the state as well as for the state centers.
The Institute on Disabilities supports Pennsylvania’s current plan to close two of our remaining state intellectual disability centers. We support it because it is consistent with our mission and values. We support it because data shows that people with disabilities experience the most dignity and respect in community-based settings. We support it because people with intellectual disabilities and young families tell us that they do not want institutions. Instead, people with disabilities want home and community-based services (HCBS) options for community living.
As the most recent data show (2017-2018) people living in public ICFs were slightly more satisfied. However, with regard to Dignity, Respect and Rights, people in public ICFs experienced less dignity than any group other than private ICFs. The data are more troubling with regard to choice and inclusion where the state ICFs scored significantly lower than any other group.
With regard to data at the national level, according to the State of the States in Intellectual and Developmental Disabilities (Braddock et.al. 2015), the population of state institutions has decreased by 12.7% nationally and by 9.4% in PA. With four institutions still open, PA is in the top 50% of states with institutions. As of 2017, thirteen states and the District of Columbia (DC, NH, VT, RI, AK, NM, WV, HI, ME, MI, OR, ASL, MN and IN) have closed all of their public institutions. PA has not proven to be a leader in this area – far from it. We are barely keeping pace with the rest of the country. The annual cost of supporting ONE person in a state institution is $255,692 nationally, and $378,016 for ONE person in PA. Thirteen states have already shown us that there is a better path forward. There is a better way. It is time for Pennsylvania to get on that path.
At this time of this posting, the PA legislator has passed Senate Bill 906 to halt the closure of all state intellectual disability institutions. We are hopeful that Governor Wolf will veto this bill as he has publicly committed to this. The facts are clear; the data and most importantly the voices of the people with disabilities and their lived experiences support community living not institutional, segregated settings. It’s time for us in PA and the other 36 states with public institutions to push for community integration and support implementation of the HCBS Final Rule because we all have a right to live in our communities without four walls.
*Author’s note: This blog post was originally drafted in January 2020. On February 12, 2020, Pennsylvania Governor Tom Wolf fulfilled his promise to Veto Senate Bill 906. The Senate lacks the necessary votes to override his veto. Even so, some members of the PA House and Senate remain opposed to closing state centers. Pennsylvania DHS remains committed to the importance of community living options for all and continues to move forward with closure plans for Polk and White Haven state centers. Closure of these centers will take at least 18 months and involves individualized, person-centered planning with each center resident.