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At its 2021 annual meeting in November, AHRC Foundation awarded $35,000 in total grants to support self-advocacy and programming focused on diversity, equity and inclusion initiatives. 

“Self-advocacy is incredibly important for people with intellectual and developmental disabilities (IDD),” shared board member, Jack Garofalo. “With so many facets of their lives supported by others, it’s important for a person to have accessible information leading to informed, authentic decisions.” 

$25,000 granted to support self-advocacy and diversity, equity and inclusion programming at AHRC Nassau.

Long regarded for its self-advocacy initiatives, self-governing advocate councils and a fully inclusive Compass committee, AHRC extended its reach this past year. It planned a first-of-its-kind, international Diversity, Equity and Inclusion Virtual Conference with a specific focus on people with developmental disabilities.  

“People with developmental disabilities experience bias and prejudice that excludes them from fully participating in our society,” shared Stanfort J. Perry, Executive Director of AHRC Nassau. “The 2022 conference will explore the intersection of disability and race, while increasing fluency and understanding of the history, challenges and opportunities impacting people with IDD and the staff who work with them. 

Nothing For Us, Without Us

AHRC Foundation made a $10,000 grant to SANYS to support advocacy efforts taking place on Long Island and statewide. 

“People with developmental disabilities are often viewed as a group of people, not as individuals,” said Karen Hirschfeld, Director of COMPASS Initiatives/Quality Insurance for AHRC Nassau. “This is complicated by a common misperception that people with IDD are unable to make choices about their own lives.”

AHRC Nassau supports the self-advocacy council within its residential services and adult day habilitation programs. Self-advocates, with staff support, provide empowerment series and engage in discussions related to personal rights and responsibilities. They also assist families and staff to understand the outcomes that are possible when a person is supported to determine their lives. 

Jack Garofalo shared a story of a young woman who was moving from her family home into an AHRC Nassau residence.  

Sally’s story

“It’s a time of adjustment for the person supported and their parent/family members,” said Jack. “Everyone wants what’s best. A point of contention can come when what the family believes is best is not aligned with the persons wishes.”

Jack recalled a memory of Sally*, who was preparing to move to a group home. She understood it as an opportunity for increased independence. It was to when her typical younger brother and sister moved out of the family home to live in their own places. Now, it was Sally’s turn.

Sally’s family was wonderfully engaged. Together with staff, Sally’s family selected her room’s paint color, bedding, curtains, and all the trimmings. They selected all the same hues of pinks and purples that Sally had in her bedroom at home. The thought was that having “almost same” room would support a seamless transition. Just the opposite was experienced, however. After the move, Sally became increasingly behavioral and did not want to spend time in her room.

Through a process known as Personal Outcome Measures (POM) assessment, it was revealed that Sally wanted a room “makeover” (even at her family home). What she wanted had been dismissed because it was so different from what her parents wanted for her. 

Self-advocacy success

The assessment revealed that Sally strongly preferred a “punk” style, a harder edge, with a black accent wall, dark purples. Sally’s family had one idea of what was “best” or right for her, and Sally had her own. Not being heard or seen by her family, and being powerless to change it prior to the POM assessment, led to negative behavior and unhappiness.

“The POM assessment provided information, and Sally and her team, working together, supported Sally’s self-advocacy with her family,” said Jack.

Through this commitment to choice and self-advocacy, Sally had the room makeover she so desired.

“The smile on her face when the room was revealed said it all,” said Jack. The staff members also learned the positive outcomes that can be achieved when supporting a person’s choice. 

“A person might not always make the best decision, or make the decision you would make,” said Jack. “However, every person has the right to make decisions for their own lives and future.”