In previous posts, I gave an overview of the self-direction programming model. Now, I would like to discuss some of the specific steps we took to decide to create and implement the self-direction program model for L.
L’s final stages in his transition journey occurred from 2020-2023. In the fall of 2020, he entered our public schools’ transition program (Next Steps). At that time, we were fortunate that his cohort was back on campus for 4 days a week, with 1 day remote. Even though they were back on campus, the “traditional way” the program was structured significantly changed. The Next Steps program had a strong community outreach for vocational and social opportunities. Still, during that 2020-2021 school year, his cohort had to remain in the building and could not access those additional programs. Even so, his teacher did an amazing job of bringing as many outside vocational opportunities as she could inside the classroom.
This is when we also started really focusing on what life after high school would look like. The first step that we took was to do our research. One of my favorite shows on HGTV is called “Vacation House Rules,” and his first “rule” when deciding on renovations for rental properties is to “do your research” to see whether the renovation project is viable or not. And that was the first step in our journey. Remember, at this time, based on L’s person-centered plan, he wanted to enter a Community-Based Day Program and was specifically focused on one that many of his older friends were attending or considering attending. For the 2020-2021 school year, that is what we were focused on, even though most of the CBDS programs we were interested in were still running remotely.
Fast forward to the 2021-2022 school year, and as we watched programs slowly open back up, we could also observe that not all programs were opening back up to full capacity due to staffing issues. We observed how people “in front of us” were getting put on wait lists and that people who may have aged out in 2020 were still waiting for placements. This was giving us a foreshadowing of what was to come when L aged out in 2023.
So, our first step was to “do our research” on self-directed programming. What did we do? Below is a list of some of the things that we did at the very beginning of our journey:
#1 Attend sessions on Self-Direction: I found that this was the best way to get introductory information on what self-direction was, what the different models were (Agency with Choice vs. Participant Directed Programming), and the general process. Some resources we used were:
A. DDS (Department of Developmental Services) in MA offered (and still offers) monthly webinars by its self-direction managers and staff. I attended this session multiple times as we were exploring this delivery model, and one of the first things that our service broker asked us was if we participated in one of these webinars before we set up our orientation meeting.
Click this link to see when they are offered: https://www.mass.gov/news/self-direction-information-workshops NOTE: even though the website says that the handout is for up to March 2023, the link is for upcoming sessions in September 2024: https://www.mass.gov/doc/self-direction-info-session-flyer/download
B. The Arc of Massachusetts YouTube Channel: they have a playlist of their previously released webinars that you can watch for free. There are many that are specific to transition planning: https://www.youtube.com/playlist?list=PLvvbasrFrWxYVVl151gOqr5wSzqHBv5qu
C. The “Advocacy for MA DDS Self-Directed Services as Envisioned by the 2014 Real Lives Law” live series: in conjunction with the MA21 organization (Click here for the website) and The Arc of Massachusetts, this series is aimed at participants, caregivers, and support brokers that are using the self-directed programming model. I found (and continue to find) this group a great resource to hear about what is going on in the world of self-direction.
D. The Arc of Massachusetts Transition Conference: this conference has recently moved to an every-other-year format. It is a great place to learn about transition services, starting at 14, and to hear from participants and organizations that are now in the adult service program world. If you visit their website, there is the ability to purchase the presentation slide bundle to get the resources that were presented at the conference this past spring: https://thearcofmass.org/conference/
#2: Websites with information specific to Self-Direction programming: I bookmarked these sites and went back and referenced them over our 2 years of planning as information was updated and changed.
A. DDS Self Directed Services website: https://www.mass.gov/dds-self-directed-services
B. Massachusetts Alliance for 21st Century Disability Policy: https://ma21alliance.org/
#3: Join a group! I found it very helpful to join the “Massachusetts Transition to Adulthood” Facebook group. With over 4,000 members at the time of this post, it is made up of parents, caregivers, advocates, and teachers who ask and answer questions related to the transition process and adult services. This is a private group, so when you ask to join, they will ask a couple of questions.
I also joined the “Circle of Care” group, started by Massachusetts attorney Annette Hines. This paid membership community provides resources, including live discussions and recorded webinars related to all areas of transition and adult services. For more information, see the website https://circle-of-care.mn.co/landing?space_id=11672637
#4: Talk to other parents/caregivers: when we were in the planning process, 2 families in our town were already doing a hybrid model of self-direction and adult service programming. Talking to them helped frame out how customizable the programs could be, but also realistically set the expectation of how much work was involved in the setup and the administration. If you don’t know any families participating in this model, this is where joining the Facebook group and attending the MA21 live series can be helpful. Also, reach out to your SEPACs to see if there are other families that are exploring this option in your school district.
Additional Resource: While this resource was unavailable when we were starting the process, I highly recommend the “Self Directed Services: Participant Directed Program” manual that DDS distributed in March 2024. This would have been a valuable resource for getting into the details of the program. https://www.mass.gov/doc/participant-directed-services-toolbox-march-2024/download
Even though these were things that we started doing when he was two years out, I continue attending webinars and conferences and following the various transition groups today. So even though doing your research is the first step, it has remained a vital “step” 3 years later. I like to think of it as doing my PD work to keep current on what is happening.
Call to action: what are 2 resources that you could look into to start your research process? Let me know in the comments which resources you found helpful.
-Cheryl
#Life Without a Filter 