Feature story: From Oregon to D.C. - a story to be shared
We sat across from John and his assistant at the Comfort Suites hotel in S.W. Portland one warm afternoon in late August. John had to temporarily relocate due to water damage from the apartment above his. It had been more than a few days of hotel living, and he was itching to get back home. It was obvious he relished the distraction of our visit.
John Calhoun, disability advocate, writer, and friend of the UCEDD at OHSU, agreed to help us tell an important story to a national audience of disability experts, professionals, and advocates. John, now 83 years old, shared stories and reflections from his life as an advocate, starting with his experience living in the Fairview Training Center. For nearly a century, many Oregonians with intellectual and developmental disabilities lived in institutional settings. The Oregon State Institution for the Feeble-Minded, then later renamed Fairview Training Center was the state's longest running residential and medical facility for people with disabilities. Fairview Training Center was its own self-contained community, largely isolated from the greater population. In addition to isolation, residents of Fairview endured other abuses - such as forced sterilizations, physical and chemical restraints, and physical abuse. In Oregon and across the country, many people admitted their family members to institutions on the advice of medical professionals or because they felt they had no other options. John became a Fairview resident in 1940 when he was 5 years old after being born with cerebral palsy.
Our meeting began with readings from John's poetry collection, including "The Circle Rainbow." This particular poem led to discussion of how residents at Fairview helped each other and worked hard despite the difficult living conditions. One of his jobs included taking care of the babies. He also organized a successful hunger strike to improve food quality. We then chatted about his life after Fairview and how the freedom of community living has led to John pursuing more of his passions, including attending advocacy conferences, making inspirational videos, and advocating for others. We asked John what advice he has for advocates in other states where people with intellectual and developmental disabilities still live in institutions and he confidently pointed to his go-to symbol for advocacy, an icon of man pushing a boulder up a hill.
Fairview Training Center finally closed in 2000 after advocates began exposing the abuses and putting pressure on the state in the 1980s. The money from the sale of the property created a trust fund for providing better housing opportunities for Oregonians with disabilities. The trust continues to be at risk during recent legislative budget decisions.
Part of the UCEDD's work toward improving health and quality of life for people with disabilities includes sharing the voices of those who have first-hand experience with the issues. Every year we attend the annual conference of our national association, the Association of University Centers on Disabilities or AUCD. A convening of advocates and professionals from UCEDDs across the country provides ample opportunity for sharing and learning in the field. This recent November, OHSU UCEDD staff presented our work in five posters and one 75-minute interactive session. One of those posters, titled "Beyond Fairview: An Oregon Story of Supporting Inclusive Community Living," highlighted John's and others' views on community living and advocacy for deinstitutionalization. In addition to bringing an Oregon story to a national stage, UCEDD staff also connected with and learned from presenters from the Indiana Disability History Project, an exemplary preservation of the state's past from the perspective of advocates.
Future projects to work toward preserving Fairview's history are in the idea stage. With our partners and advocates, we hope that this story will continue to be shared and the Fairview Trust will persist. After all, we know that historical context is critical to understanding the current events, culture, and attitudes of today.
For more information, follow these links:
OHSU Center Helps Youth with Disabilities and Families Navigate Transition
For transition age youth with special health care needs (SHCN), moving from pediatric to adult health care is a critical, but often uncertain journey. We know that 79% of Oregon families with SHCN do not receive adequate health care transition services. Common barriers encountered include a lack of adequate time during specialty clinic visits to address transition, limited training about specific disabilities and transition in medical and allied health programs, a variation in family readiness to start the transition planning process, a delayed start to transition planning, and inadequate information about community resources. The Child Development and Rehabilitation Center (CDRC) at Oregon Health & Science University (OHSU), which provides inter-professional services for families from Oregon and SW Washington who experience SHCN, is looking to change how youth, families, and providers approach healthcare transitions.
We started a lifespan transition clinic because families wanted to have a separate clinic visit dedicated to issues related to health care transition to adulthood. Following best practice for person centered planning, we started by making sure there was dedicated time to discuss all of the needs including the young adults' hopes and fears as they move toward an adult system of care. The goal of this clinic is to help families set meaningful goals that get them started on the path toward a successful transition.
When young people and their families come to the clinic they participate in transition readiness assessments for independence skills, emotional and physical health, and set priorities for what they want to work on going forward. We are also developing a peer support resource for the youth. This includes a self-advocate who has been through the transition process and will share their knowledge and experience about transitioning.
We aim to figure out how to make sure youth and families have the community supports necessary for a seamless transition. As a specialty medical center, we have to rely on strong partnerships to provide the necessary level of care coordination supporting follow through on transition goals. One community partner is the Oregon Center for Children & Youth with Special Health Needs (OCCYSHN) who is helping our communities through Shared Plans of Care or SPoC. They have contracted with many community partners throughout the state to help with SPoC planning. Our aim is to identify the youth and families' health goals and identify the community partners who can help with implementation of those goals.
Transition to adulthood can be both an exciting and overwhelming time for young adults with disabilities and their families. With good support and planning, young people can make this transition and live healthy and independent lives. To learn more about our Lifespan Transition Clinic contact firstname.lastname@example.org.
OODH and UCEDD Partner to Reach Oregonians Across the State
In a collaborative partnership, Oregon Office on Disability and Health (OODH) and the UCEDD are conducting a series of disability and health listening sessions in five communities: Portland, Pendleton, Bend, Grants Pass, and Gold Beach. The goal of the listening sessions is to better understand the health and wellness needs of people with intellectual and developmental disabilities (I/DD) by hearing directly from people with I/DD, their case managers, direct support staff, and service providers. Information gathered from the listening sessions will help both centers develop effective and successful health promotion curricula and programs, trainings for professionals and community members, health transition guidance and plans, and targeted wellness media campaigns.
The first listening session was conducted in Pendleton on November 7th. We spoke with disability service providers, community health workers, public health employees and people with I/DD. The topics discussed during the listening session included tobacco use, sexual health, mental health, and diabetes. OODH and UCEDD staff shared information on each of the 4 topics, including prevalence and health disparities data and current trends or needs, and then conducted round table discussions with attendees. We asked questions that addressed:
- what they felt were their community's strengths, gaps and training needs,
- who in their community currently provided supports and/or training,
- who in their community would be best to provide supports and/or training and in what delivery format, and
- what additional information they would like on each topic and how can OODH and the UCEDD help.
The initial results from the listening session provided many valuable insights into the health promotion and education resources, supports, gaps, and needs within the communities in and around Pendleton. One example of a great success of the event was the connection that was made between the local public health department (LPHD) and several of the disability agencies' representatives. It was apparent that the disability agencies' staff and people with I/DD did not know about the wealth of information, supports, and services available to them from their LPHD, especially the tobacco cessation resources. After the LPHD employees shared information about their resources, two participants with I/DD stated how excited they were to go to the LPHD after the listening session to begin their journey to quit tobacco. More general information we obtained from the attendees included information about the lack of, and thus the need for, high quality training for direct service staff on all four health topics. In addition, we learned that the amount and quality of training that was available was not consistent across various agencies and for direct support staff.
The lack of mental health services drew significant attention as one of the most pertinent needs in rural Oregon. The issues included the overall lack of mental health providers in rural areas compounded by the lack of providers who are trained to work with people with I/DD and who accept Medicaid. There were also passionate discussions about the need to decrease or eliminate the stigma that still exists for those with a mental health diagnosis and/or those simply wanting to access services. The attendees also shared their frustration regarding the lack of opportunities within the community for people with I/DD that offered social connection and promoted a sense of community and belonging.
At the conclusion of the listening sessions it was clear that although there are caring agencies doing their best to provide services, there is a significant need for: 1) affordable, appropriate and high-quality training for professionals providing services to people with IDD; 2) community education and organizing to help address access barriers (including stigmas), bridge the financial gaps, and leverage supports and resources; and 3) collaboration between agencies and community partners to better assist people with I/DD to navigate services.
Sign up for notifications of upcoming listening session dates by emailing email@example.com.
- Jan. 29 - Transition to Adulthood Town Hall - OHSU Robertson Life Sciences Building (RLSB), Room 3A003A, 5:30 p.m. - 8:00 p.m.
- Feb. 1 - Last day for applications for 2019 UCEDD Summer Internship Program. More information, application and instructions can be found here.
- Feb. 18 - The UCEDD is preparing for another cycle of the National Core Indicators Project. In partnership with Oregon Developmental Disability Services (ODDS) and the National Core Indicator (NCI) Project, the UCEDD is conducting in person interviews across the state.
Click here to subscribe to this newsletter and more from the UCEDD