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Reinventing Quality 2016
Registration is now open for the Reinventing Quality 2016 Conference, which takes place in Baltimore July 31 - August 2! Topics for the 2016 conference include:... Read More
Administration on Community Living awarded HSRI the lead on The ACL Grassroots Project
The ACL Grassroots Project: Engage. Connect. Advocate. The Administration on Community Living (ACL) awarded HSRI the lead on the ACL Grassroots Project which will use a multi-system (e.g., national, state, and local) approach to: Develop structures, processes, and relationships necessary to build the next generation of cross-disability, cross-generational, and culturally diverse leaders within the advocacy movement.’ Connect, grow, and strengthen networks of grassroots advocacy and action coalitions supporting each other and with the skills and knowledge to advocate for improvements in the quality of community-living supports. ... Read More
Nicole LeBlanc
Nicole LeBlanc is the coordinator of the Person-Centered Advisory and Leadership Group (PAL-Group) for the National Center on Advancing Person-Centered Practices and Systems (NCAPPS). She helps ensure that the PAL-Group informs and supports the direction of the efforts of NCAPPS and helps with the development of cognitively-accessible project materials and resources that reflect the experiences of people with disabilities. Nicole has a keen ability and interest in public policy and excels at communicating the needs of people with developmental disabilities to public officials. She worked for 8-plus years at Green Mountain Self-Advocates (GMSA) in Montpelier, Vermont, as advocacy director, supporting her peers with disabilities to feel comfortable talking to elected officials about their needs. While at GMSA, Nicole served as the project assistant for the Inclusive Healthcare Partnership project, researching tools that would assist people with I/DD in getting their health care needs met. She also helped prepare the self-advocate team members for monthly meetings on topics such as transition from pediatric to adult health care providers, health and wellness, and healthcare policy. Nicole is a natural leader chosen by her peers due to her unwavering commitment to speaking the truth to power. She has presented keynotes on the dignity of risk at statewide self-advocacy conferences in Alabama, Missouri, and Rhode Island. Since 2011, Nicole has consulted for Self-Advocates Becoming Empowered and the Autistic Self-Advocacy Network—developing self-advocacy tools and curriculums, presenting webinars and video blogs on the topics of healthcare, what is autism, presuming competence, self-managed services, voter access and employment of people with disabilities. Nicole moved to the D.C. suburb of Silver Spring, Maryland for a Paul Marchand Public Policy internship at AUCD that went from 2016-2017. Nicole will not shy away from taking on big challenges and new adventures. In 2017, Nicole traveled to Iceland and Ireland as part of the AAIDD delegation. Since November 2017, Nicole has been the advocacy specialist for the Southern Region of Maryland where she assists self advocates in dealing with the challenges of the service system. From February 2018 to September 2018, Nicole served as the Dr. Ruth Sullivan policy fellow. From March 2018 to March 2019, Nicole was the SARTAC-Self Advocacy Resource and Technical Assistance Center fellow for NDRN where she created a booklet on advocating for policies that promote Competitive Integrated Employment (“Real Jobs for Real Pay”).... Read More
Handling Emergencies: A Guide to Personal Safety and Emergency Management
This guide for individuals with disabilities helps people who live in their own homes to prevent emergencies from occurring and to plan in case an emergency does occur. Prepared by HSRI for the State of Oregon, Services to People with Disabilities, the guide addresses six risk areas — medications, medical conditions, abuse & neglect, back-up caregiving, home safety and natural disasters — and includes an emergency information sheet and other quick-reference lists.... Read More
Jami Petner-Arrey
We are pleased to announce that Jami Petner-Arrey, Ph.D., will join HSRI in the position of policy associate on April 6. Jami will work within our intellectual and developmental disabilities (I/DD) studies team in our Tualatin, Oregon office. She’ll participate in and manage projects related to the design of support systems for people with I/DD. Popular topic areas include self-advocacy, means for supporting families, strategic planning, and systems redesign centered on establishing individualized supports budgets for service recipients. These efforts will primarily involve quantitative or qualitative data analysis, policy analysis, and partnerships with state human services agencies, local organizations, and others. Jami completed her doctoral studies in special education at the University of New Mexico with supporting studies centered on social justice, advocacy, and public policy. Previously, she served as a Homebound Head Teacher in the Albuquerque Public Schools and as university instructor. She also completed post-doctoral studies in Ontario, Canada to explore employment practices and person?directed planning for people with I/DD.... Read More
HSRI Presentations from AAIDD Annual Meeting 2015
HSRI President Val Bradley and many members of our staff recently attended and presented at the AAIDD Annual Meeting in Louisville, Kentucky. The conference sessions and plenaries highlighted exciting innovations in research, practice, and policy, and HSRI attendees returned feeling motivated and energized about progress in the field. Here we provide a number of the presentations they gave, covering such topics as staff stability, the new HCBS requirements - tools for tracking compliance and for self-advocates, and quality of life data and trends.... Read More
Inclusion article
Are people with autism benefiting from disability reforms and supports to the same extent as people with other developmental disabilities? HSRI staff, along with partner Ari Ne’eman, examined the NCI Adult Consumer Survey data to find out. They discovered that, compared with respondents without an ASD diagnosis, respondents with ASD were less likely to have paid jobs in the community, less likely to have had input into major life decisions, and less likely to be included in their communities. Check out their newly released article in the journal Inclusion, featuring additional findings and some suggestions for future research and policy. Congratulations to the authors – HSRI’s Dorothy Hiersteiner, Valerie Bradley, Julie Bershadsky, and Alixe Bonardi, and Ari Ne’eman of the Autistic Self Advocacy Network!... Read More
Finn Gardiner
Finn Gardiner is a Master of Public Policy student at the Heller School for Social Policy and Management at Brandeis University. He holds a bachelor’s degree in sociology from Tufts University. He currently works with the Lurie Institute for Disability Policy at Brandeis University and the Autistic Self Advocacy Network. Throughout his work, Finn combines disability advocacy, policy analysis and research, and written and visual communications through policy briefs, original reports and white papers, and contributions to research projects. His research and advocacy interests include education and employment for autistic adults, comparative disability policy, inclusive technology, LGBTQ cultural competency, and policy that takes into account the intersections between disability, race, LGBTQ identities, class, and other experiences. Finn recently worked with a team of researchers at the University of Massachusetts Medical School and HSRI on a project that gauged attitudes about the creation of an autism database in Massachusetts in order to create policy recommendations for the state. Finn is a seasoned public speaker who has appeared at a variety of venues, including the Obama White House’s 2016 LGBTQ Disability Day panel, the National Council on Disability’s panel on inclusive technology for people with disabilities, the United Nations’ 2016 Disability and Ageing Symposium, and the 2015 and 2017 American Association on Intellectual and Developmental Disabilities national conferences. Finn’s writing has been published in NOS Magazine, The Thinking Person’s Guide to Autism, and the anthology All the Weight of our Dreams. ... Read More
Perspectives: NDEAM and the Role of Vocational Rehabilitation Counselors (Part 1 of 2)
Author’s Note: On Sept. 26, 2023, the U.S. celebrated the 50th anniversary of the Rehabilitation Act of 1973, also known as the “Rehab Act.” The Rehab Act was the first bill in Congress focused on addressing the need for equal access for people with disabilities. The Rehab Act requires elimination of accessibility barriers in the areas of employment, transportation, and physical access. In addition, this law also created rights for the disability community. Section 503 of the Rehab Act requires employers under federal contract to take “affirmative action to hire, promote, and retain employees with disabilities.” (Source: Department of Labor) This year’s National Disability Employment Awareness Month (NDEAM) theme is “Advancing Access and Equity: Then, Now, Next.” The Office of Disability Employment policy will use this year’s theme to celebrate the 50th anniversary of the Rehab Act and promote events marking its anniversary. The Rehab Act is what paved the way for the Americans with Disabilities Act of 1990. One of the major parts of the Rehab Act is that it set up grants to states for independent living services, supported employment and vocational rehabilitation services, client assistance programs, and more. However, when it comes to equity and employment for people with disabilities, there are a number of improvements needed. Some of these improvements should happen at employment support provider level, others at the employer level, and still others at the systems level. In Part 1 of this 2-part blog post, we will focus on recommendations for improvements at the level of employment support providers, sometimes called vocational rehabilitation (VR) counselors. Vocational rehabilitation (VR) is a major funder of employment services for people with disabilities. While VR has been around since the 1920s, some people with disabilities still have unsuccessful outcomes despite receiving VR services. This is especially true for people with intellectual / developmental disabilities and autism, who still face major hurdles in our society to achieve real jobs for real pay. Data suggests that people with autism had the highest rate of unsuccessful cases. In order to better support people with disabilities, VR needs to become more person-centered. Some potential solutions focus on the level of the vocational rehabilitation providers, while other solutions are focused more on VR agencies and state services systems. First, solutions that VR counselors can adopt to promote more person-centered employment supports include: Do not insist that people with disabilities choose career goals based on what’s written in occupational outlook books or briefs on what jobs are fastest growing over the next 10 years. Focus on meaningful careers, not just jobs. A career is what someone does for a living. It is focused on something a person with a disability has a passion for. One example is disability policy advocacy, in my case. A career comes with opportunities to grow and benefits like paid time off. It is in an area and with a business that values people with disabilities. A job provides a paycheck and a place to go every day to make money. It may not always be in an area a person has a passion for. A job for a person with disability is often in food services, sanitation services or “filth,” flower shops, or filing related activities (also known as the 4 F’s of disability employment: food, filth, flowers, filing). Train VR staff on how to get creative and encourage the people they serve to take advantage of and use work incentives to support people with disabilities in attending college, starting their own businesses, and having careers, not just jobs. Work incentives include SSDI subsidy, IRWE-Impairment Related Work Expense deductions, PASS plan, etc. Additional training requirements for all VR counselors should include customer-focused job development and person-centered practices.[ii] All VR staff should be trained on presuming competence, having high expectations, and teaching us and our families how to dream big about employment goals. Schools and providers must embrace high expectations and use strength-based methods rather than the deficit or medical model of disability. Professionals must project hope from the time children with disability are born until the time they graduate high school and move into adulthood. Disability is a fact of life; as the COVID-19 pandemic has shown us, anyone can become disabled at any time. More often than not, when we set low expectations, it limits our quality of life. There is more to life than staying home, collecting benefits, and living with family isolated from the rest of world. Overprotection is harmful to our mental health in the long term. Invest in peer mentoring where disability providers hire people with disabilities to support others with disabilities. This will allow VR to support peer mentoring programs, and peer run employment support groups for those who are unemployed or under-employed. It also is a great a way to presume competence because it promotes hiring people with disabilities by state employment networks. While these recommendations have the potential to generate more person-centered VR supports, they may not get much traction without parallel system-level supports, such as: Increasing wages for VR counselors to address staffing shortages. Increasing access to VR and employment support services for people who are on waiting lists for HCBS. Developing programs for employment supports for individuals who are interested in self-employment or gig economy careers. Moving away from the “Place and Train” model of service that sticks people with disabilities in any job. This model is centered on employers rather than on the personal needs, choices, or goals of people with disabilities. Giving money to self-advocacy organizations to facilitate peer-led job clubs and Hire Up programs that support people with disabilities who are unemployed or underemployed in overcoming challenges. Changing the name of the Division of Vocational Rehabilitation to HireAbility to better reflect what they do, which is supporting people with disabilities to get jobs and increase economic independence. Some states are adding benefits to the Medicaid state plan, like the Community First Choice Option waiver, but in states like Maryland, someone like me is still unable to get supports. Adding HCBS services to the state plan is a perfect solution, but it must have looser criteria and not be based solely on medical needs or nursing level of care. While we have come a long way in advancing equity in disability employment for some, we still have a way to go in improving employment outcomes for adults with autism and other developmental disabilities. Given how the pandemic has opened the door to remote work, now is a perfect time to invest in initiatives that prepare people with autism and other disabilities for professional roles. Lastly, our system needs to support career advancement. The time is now to invest and expand job coaching so that all people with disabilities can experience meaningful work. i https://www.crisoregon.org/cms/lib/OR01928264/Centricity/Domain/45/Documents/32IRI_autism.pdf ii https://rrtc.vcu.edu/news/customernl.htm... Read More
HSRI’s Celebration of the 60th Anniversary of the Developmental Disabilities Act
HSRI Founder and President Emerita, Valerie Bradley, penned this article on the 60th anniversary of the groundbreaking Developmental Disabilities Act (DD Act) of 1963—an indisputable reason why the lives of people and their families nationwide have greatly improved over the decades. Using data from the National Core Indicators-IDD® 2021-2022 In-Person Survey, Bradley assesses the extent to which we have lived up to the expectations presented in the DD Act. ... Read More