Blue Ribbon Commission Legislation: An Opinion by Heather Burroughs

Summary of the "Blue-Ribbon Commission on the Future of New York State's Service Delivery System for Individuals with Intellectual and Developmental Disabilities" Legislation:

The proposed legislation seeks to establish a temporary commission to evaluate New York State's service delivery system for individuals with intellectual and developmental disabilities (IDD). The commission will examine key areas, including workforce recruitment, person-centered supports, infrastructure, evolving service needs, housing opportunities, and employment, with the goal of recommending reforms to ensure sustainable supports and services. The bill can be found here: https://www.nysenate.gov/legislation/bills/2023/A9553/amendment/A

Potential Drawbacks:

• Limited Representation and Independence: The Governor appoints 7 of the 15 commission members, risking limited diversity of perspectives and potential bias toward maintaining the current system. The designation of the OPWDD Commissioner as chair creates a conflict of interest, as the agency under review would lead the commission.

• Exclusion of Self-Direction and Family Representation: The commission excludes representatives from the Self-Direction community, and family members were removed from the bill. These omissions could result in recommendations that do not reflect the diverse needs and experiences of people living across the state.

• Narrow Focus on Key Issues: While the commission's scope is broad, it lacks emphasis on innovative models like Self-Direction that provide greater autonomy and control. It also does not address concerns about the Justice Center and Quality Assurance, missing opportunities for meaningful reform.

Suggestions for Improvement: To make this legislation more effective and gain support from the IDD community, consider the following modifications:

• Ensure Broader Representation: Many of us embrace the philosophy of Self-Direction, which values the dignity and respect of individuals by offering them greater control over their services. It is disconcerting to see that those who have chosen this model are not represented in the commission, leading some to question whether OPWDD is pulling back on this option. Regardless of future plans, our experiences should help inform whatever the commission proposes to improve systems for all New Yorkers with IDD. Currently, OPWDD serves approximately 135,000 individuals, while an estimated 436,825 New Yorkers have an IDD, suggesting that a significant portion faces challenges but has not been deemed eligible. Additionally, 109,206 individuals with an IDD live with a family member aged 60 or older, highlighting the urgency of creating a more inclusive and responsive service delivery system.

• Promote Independent Leadership: Appoint an independent chair or co-chair to avoid conflicts of interest and maintain unbiased oversight. This will help restore confidence among those who have been disenchanted by past efforts to reform systems without sufficient family input.

Take Action: If you have concerns about this legislation, please reach out to your legislators to tell them why. You may also want to ask them what their thoughts are on another group that has formed to re-imagine the way people with IDD are served. The Whole Person Supports Coalition has three past OPWDD commissioners involved, providers, and now family members and self-advocates: https://www.wholepersonsupports.org/