Please join us for our March 24th Networking Meeting, on Zoom, at 4 pm ET.
Our topic for this meeting is State Protection & Advocacy Agencies (P&A’s)
Why this matters:
The Protection and Advocacy System was created over fifty years ago, when the majority of people with intellectual and developmental disabilities and autism were being housed and warehoused in harsh, state-run, institutional settings that offered little comfort and even less therapy. A movement arose to move people into more appropriate settings, called “the community” by creating smaller group homes and providing services to those who could thrive in their own homes or at home with their families. This was the origin of Home- and Community-Based Services (HCBS). The P&A system was created as part of the DD Act to help effect this change.
Throughout these five decades, P&A’s have interpreted their mandate as being to advocate against institutionalization and to protect people with I/DD from abuse and neglect in institutional settings. P&A’s forced the closure of many state-operated intermediate care facilities (ICF’s) and closed admission to many of those they had not been able to eliminate. While one could argue that their efforts have been life-affirming for many, they have created bad outcomes for many people who needed higher levels of care and did not receive the services they needed in smaller settings.
When the DD Act created the P&A system, over well over 95% of people with I/DD lived in institutions. Now, 95% of people with I/DD and autism receive services through HCBS. Despite this change in the makeup of Medicaid services for people with intellectual disabilities, P&A’s continue to follow their original mandate. They advocate to close institutional settings and protect people who they feel are being abused in those settings, but they fail to protect the people who receive services in HCBS settings – including those who they have “protected” from abuse in institutional settings by forcing them into the HCBS system.
Furthermore, P&A’s do not feel they need to account for their activities to the people they are supposed to protect and advocate on behalf of. They don’t feel the need to account for their activities to the state legislators responsible for designating the state’s P&A agency and accepting federal funding to support the P&A. They do not account to Congress, that authorized the DD Act and continues to approve their annual funding. Instead, they account only to the Administration for Community Living (ACL) and to their umbrella organization, the National Disability Rights Network. And they have resisted any efforts to change the nature of their mandate and to be accountable to the states that fund them and the people they are supposed to serve.
We assert that the time has come to update the mission and the mandate of the P&A system to meet the current needs of all people with I/DD and autism. We are not trying to eliminate P&As. We just want them to protect people from abuse and neglect, regardless of the setting in which they reside, and for them to be accountable to the people they serve.