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A Message From Our President
This month, I participated on the Sarah Taub Webinar Series—named for our wonderful colleague who died of cancer almost 3 years ago—and presented data on outcomes for people on the autism spectrum. I was joined by Ari Ne’eman, leader of the Autistic Self Advocacy Network. Using National Core Indicators™ (NCI™) data, I explained that, nationally, outcomes for people on the autism spectrum are not as positive as those for people with intellectual/developmental disabilities who are not on the spectrum. This finding held true for outcomes such as choice, friendships, and employment. People on the spectrum are more likely to have a guardian, to have a mental health diagnosis, and less likely to live in their own home or apartment. Ari Ne’eman responded to these findings by discussing policy reforms necessary to improve these outcomes, including better research (particularly on adults on the spectrum), increased funding for housing, enhanced employment initiatives, expansion of supported decision-making, and expansion of services through HCBS 1915(i).
The webinar recording is available on the HSRI website.
Val Bradley
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Coming Soon
Our upcoming NCI Data Brief, to be released this month, focuses on friendship networks and outcomes for adults with intellectual and developmental disabilities (I/DD). We compare outcomes for adults whose friendships are limited to family or paid staff with those who have more extensive friendship networks. We also share some resources for supporting people to expand and maintain relationships outside their immediate circle of family and staff.
Sebastian Porsdam-Mann, who interned with HSRI’s behavioral health team in 2015, HSRI President Val Bradley, and Barbara Sahakian co-authored an article that has been accepted for publication in the journal Health and Human Rights. The article is a systematic review of human rights-based approaches to mental health care.
Stay tuned for publication dates!
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HSRI Policy Specialist Elected to AAIDD Board
In March, the American Association on Intellectual and Developmental Disabilities (AAIDD) announced that Alexandra (Alixe) Bonardi had been elected to its board of directors in the role of secretary-treasurer. Alixe is a senior policy specialist with HSRI and directs the NCI project. She will serve on the AAIDD board for three years, beginning on July 1.
“I’m looking forward to deepening my connection with AAIDD and to serving in this role. HSRI’s support was a major factor in my decision to run for this position to help lead AAIDD as it continues to develop and improve in response to changes in our field,” said Alixe.
Read more
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Evaluation Updates on Child Welfare Waiver Services
With Title IV-E waivers, states can use federal funds that are normally allocated to foster care for a range of child welfare purposes. In this way, they can test new approaches that have the potential to reduce out-of-home placements. HSRI evaluates Title IV-E waiver demonstration projects for multiple states, many of which are implementing a combination of initiatives that include family engagement, trauma-informed assessments, trauma-focused treatment, Permanency Roundtables, and kinship supports. This winter, our team produced two major reports on states’ implementation activities: a final report on Ohio’s latest waiver period and an interim report on activities in Colorado.
According to HSRI’s Child and Family Services team, “These evaluation reports come at a pivotal time of national conversation about child welfare policy and finance reform; the findings in these reports may help inform the local and national trajectory of child welfare funding and best practice.”
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Maple Leaf Edition of The Riot!
In February The Riot released its first-ever Canadian issue, a collaboration between The Riot staff and People First of Canada (PFC). In it, PFC members share stories of belonging. Click here to read The Riot! Issue 36: We Belong.
The Riot is an HSRI publication that features content from self-advocates. Visit theriotrocks.org for more information.
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New Members of the Team
We welcomed two new staff members recently. Colleen Kidney joined our Tualatin, Oregon office as a policy associate. Colleen holds a doctorate in applied community psychology with a minor in research methodology. She’ll participate in and manage projects related to the design of support systems for people with intellectual and developmental disabilities. Hailey DuBreuil joined as an administrative assistant for our Cambridge, Massachusetts office, supporting our health data and behavioral health teams. Hailey previously worked at the Michigan Department of Health and Human Services.
Read their full bios
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National Core Indicators Webinars
In February, HSRI staff helped develop and present an NCI and NASDDDS webinar entitled "NCI and HCBS Webinar: State Level Monitoring of Compliance." Focusing on state developmental disabilities agencies and their progress toward compliance with the new HCBS rules, the presentation covered the current state of HCBS regulations; a crosswalk document that identifies relevant NCI data that states can use to demonstrate systems-level compliance; and specific ways that South Dakota and Indiana are using NCI data to demonstrate compliance.
As previously mentioned, Valerie Bradley and Ari Ne’eman (president and co-founder of the Autistic Self Advocacy Network) presented this year’s Sarah Taub NCI Webinar. Entitled "National Core Indicators and Autism Spectrum Disorder: Putting the Data in Context," the presentation featured NCI data on demographic characteristics and outcomes for adults on the autism spectrum who receive services from state I/DD systems—with the goal of understanding how to best design services and supports for people with autism. Val and Ari also provided policy and research recommendations that address the need for services and supports that encourage inclusion, integration, autonomy and decision-making, productivity, and independence.
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Applications Being Accepted for National Leadership Institute
The University of Delaware is holding a Leadership Institute on Developmental Disabilities this summer, from July 10-15, and applications are now being accepted. The deadline to apply is May 4.
This week-long, intensive leadership development program is designed for current executive-level leaders and emerging leaders. Participants may work in areas of management or program leadership in organizations that provide, advocate for, or fund supports for people with intellectual/developmental disabilities and their families.
The focus of the Leadership Institute is on assessing and strengthening leadership skills, setting organizational direction, and understanding the future of the intellectual/developmental disabilities field. Institute participants come away with demonstrated leadership ability and a firm grasp of the skills and values critical for quality, individualized supports.
HSRI partners with the University of Delaware as a part of the National Leadership Consortium on Developmental Disabilities.
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