Feature Issue on Self Direction

In July 2023, RIPIN, a Rhode Island-based non-profit organization that focuses on helping consumers navigate healthcare, special education, and healthy aging, launched its newest program: the Self-Directed Support Program. The program, funded by a grant from the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities & Hospitals (BHDDH), aims to guide and support individuals and their allies in navigating the systems and supports available to them when they choose to self-direct their services.

One way the program addresses this goal is through training and education, such as regular online meetings and webinars that share information of interest and importance. Content has ranged from panels with each of Rhode Island’s six fiscal intermediaries to employment services available to self-directed consumers, natural supports, support brokers, peer-focused discussions about employment success and self-advocacy, and more. You can access the full range of topics in the recordings from these sessions.

Communicating directly with consumers and their families is a priority for our team of five RIPIN professionals, which includes Sue Donovan, director; Sharon Kochan, program manager; Jane DeMelo and me, support navigators; and Olga Hulse, bilingual support navigator. Through a phone-calling campaign, the team has been tasked with reaching out to all 1,250 people participating in self-direction in the state, obtaining information, and garnering feedback on issues that are important to them. Additionally, we are contacting 88 Spanish-speaking individuals. The support navigators listen not only to concerns and challenges but also to the triumphs and successes. The collection of this feedback is documented and communicated with representatives from the state, with the intent of improving self-directed services and communication and increasing capacity.

Kelly Donovan passes out information and resources at the Advocates in Action exhibitor table with Andrew Whalen at the Self-Directed Support Conference.

Informed by the calling campaign, along with advisory and stakeholder input, the team held its most ambitious and widest-reaching event to date. The Self-Directed Support Conference, which we expect to be an annual event, took place in Rhode Island.

Everything about this conference was carefully thought out with accessibility in mind. For example, two hotel guest rooms were reserved and set up with the equipment and support to serve as an adult changing room and a safe and calm “sensory” area to go if taking space was necessary. A Communications Access Realtime Translator (CART) reporter and simultaneous Spanish translation were available for those who needed it. Space in each session breakout room was reserved to ensure that those using wheelchairs, and their support staff could find a spot where they could see presenters, be comfortable, and fully participate. Evaluation surveys were designed to include visuals, such as emojis and thumbs up or down, to measure satisfaction rather than a number scale, in addition to being translated into Spanish. Special dietary needs were accommodated as much as possible. For needs that had not necessarily been met, a “solutions desk” was set up in a central location where people could go for assistance and support.

Another important aspect of making this free event accessible was ensuring priority was given to consumers and their families, caregivers, and other supporters first. So, pre-registration for professionals was opened a month and a half later. Additionally, Olga Hulse, the bilingual support navigator, focused on directly communicating with Spanish-speaking consumers and their families through personal phone calls, assistance with registration, and follow-up reminders for those who planned to attend.

As of the close of online pre-registration prior to the event, 326 people had registered. The registrations comprised 53 English-speaking and 10 Spanish-speaking consumers, 106 English-speaking and 19 Spanish-speaking parents or caregivers, 55 direct support professionals (DSPs), and 83 professionals, exhibitors, and/or presenters. On the day of the conference, about 250 attendees were counted, including 20 RIPIN staff members who assisted with the event's operation.

The day began with welcome remarks from RIPIN leaders and Kevin Savage, director of the Division of Developmental Disabilities at BHDDH. Participants attended two presentations in breakout sessions on topics of their choice. A lunch plenary session was held for the whole group, followed by a third session with three breakout choices.

The breakout sessions consisted of panels and presentations, with diverse individuals speaking from their perspectives on their role in the process. Panel discussions were facilitated with questions and prompts to encourage conversation and interaction across roles in multiple settings. Topics included employment, information from BHDDH, a community activity guide, self-directed staffing, supported decision-making, goods and services, and blending self-direction with more traditional services.

Throughout the day, attendees were welcome to visit the 15 exhibitor tables set up and staffed by representatives from all of Rhode Island's fiscal intermediaries, state agencies, support brokers, and advocacy organizations. Exhibitors were strategically chosen to be the most relevant and important organizations for those involved with self-direction, and only those who were identified by the team were allowed to participate. These tables were observed to be consistently busy, and according to feedback, both exhibitors and conference participants reported that they appreciated the opportunity to connect on a more personal level.

During the lunch plenary, Rhode Island’s statewide self-advocacy organization, Advocates in Action , hosted a question-and-answer session with peer mentors specifically involved in self-direction. Many people in the audience said they felt inspired and observed that this was a safe place to speak and share their own experiences and feelings about participating in self-direction. Some audience members reported that they became emotional and were touched by their stories and bravery to speak in front of so many people.

Of the 94 evaluation surveys collected that day, RIPIN received feedback from 24 individuals who self-direct, 34 parents, guardians, family, and or caregivers, eight direct support professionals, 27 other professionals, and one family member or ally of youth in transition.

Data was analyzed from a “before and after” viewpoint. Participants were asked to assess their knowledge, confidence, and ability to find and communicate important information and collaborate with others about self-direction. Before the conference, 68% agreed with the statement “I am knowledgeable about self-direction.” After the event, 93% agreed. Pre-conference, 57% agreed with the statement “I feel confident navigating self-directed services,” and after, that number rose to 80% agreement. Before the conference, 66% of attendees felt they could communicate about self-direction to others, but after, 91% agreed. Two-thirds of pre-conference attendees agreed that they could “…collaborate with other parents and/or professionals…,” 90% agreed with that statement after the event. Impressively, those who said they disagreed with all of the statements beforehand ranged from 9-12%, but afterward, the data showed only 0-2% disagreed.

Feedback for each breakout session was positive. The majority of respondents said they were satisfied (agreed or strongly agreed, marked by a progression of five faces, from frowns to smiles) with the workshop they attended. There were a few “neutral” responses, but no one marked off any frowning faces.

Results from the evaluation also showed the most successful ways this conference was promoted to the public. The top sources came from direct contact with RIPIN staff, the RIPIN self-directed program’s monthly engagement newsletter, and a newsletter put out for the state through BHDDH.

The day was filled with positive engagement, an exciting and urgent sense of importance, and gratitude from attendees, volunteers, professionals, presenters, exhibitors, and other RIPIN staff. Energized by the conference's success, the RIPIN self-directed support team is grateful for the consumer feedback and hopes to host the event again next year. Until then, the self-directed support team is focused on their January through June programming calendar, which takes the needs of consumers and goes a little deeper to help them resolve an issue or enhance their services.

The public feedback from the conference informed our 2025 programming, including the addition of more in-person activities that bring together participants, families, staff and other allies in a relaxed, fun environment.