Self-Determination Part II: Interview with Will

In this month’s newsletter, we continue our conversation on the Self-Determination Program (SDP) versus the old system with the very knowledgeable Will Sanford, who has worked in the DD/ID (Developmental & Intellectual Disabilities) space for over 40 years, seven of which have been spent in helping roll out the SDP program which will be available to all regional center clients in June. Please read Part 1 of the interview in last month’s newsletter for additional background.

Will emphasizes that the SDP is about control, responsibility and understanding; ultimately, you have the right to make your own decisions about what you want to do and how you interact with others. The hardest part right now is helping people understand that they can make different choices, and that their plan should be within their full control.

Will points out that many people may not necessarily need 24/7 support staff, which is a traditional belief in the DD/ID community. People can be alone for extended periods of time on their own without supervision if they are empowered to be independent. That being said, some may need more support than others. It is possible to leverage technology and online coaching to help better address these needs.

All this allows for increased budget flexibility-- such as the ability to pay slightly higher for preferred services that can help some people find the services they need. Will stresses that if your Self-Determination Program is written well it can tie into what you want to do, plan to fund an extensive number of resources, and enable individuals to have much more flexibility to be engaged in the community. He gave the example of his client who now has a broader range of dentists outside of Dentical, that he can now see to fit his specific needs.

For those with higher support needs, SDP will certainly mean more work on the support team side than simply saying “our son/daughter is going to go to the day program for 30 hrs/wk, we don’t have to worry about it.” Will understands that there will still be a significant number of folks who will choose to stay with the traditional system because it seems simpler, but whether they get what they want out of it really depends on who is making that decision.

Ultimately, the hope is that with the new program even individuals with pretty significant impacts can start to live a life that is much more aligned with what they want to do. The assumption is that if they have the traditional system which provided significant support to them, they would have a pretty significant budget under SDP to help support them in very different ways-- the question is building a strong Person-Centered Plan and staffing to make it happen.

Will also adds that one challenge is we don’t do a great job in supporting people make decisions about their own life, as early as in the K-12 system. There is a disconnect in the K-12’s mild, moderate, severe classifications and how to work with folks to develop social skills and decision making skills. It has to also be about a goal of moving forward in terms of what we are going to do and how we are starting to build on the education that is being provided. For example, Will is working on getting speech pathologists who will support communication as a way to help someone function in the community rather than just look at it in terms of being able to speak. He says it's not easy, it's not simple and it's really pushing back into the K12 to try to bring them along.

Will and I spent a considerable amount of time discussing employment as that is a huge area of concern for adults with disabilities. DOR has been the traditional generic service when it comes to employment. Will however felt that DOR does not mesh well with SDP as they require clients to use an existing vendor which does not allow for flexibility. Another issue is that DOR is a classic bureaucracy with 80% of its budget from the federal government which rewards the number of closed clases and quick turnarounds of cases through the system. So people who have more complex support needs or those who need a longer turnaround in getting to a job are often screened out of DOR supports. He likens DOR to a slow moving boat and feels they need to move away from the old school thinking that some folks are not really going to get a job, so we're not really going to support them or we’re going to discourage them which is not really their role. Instead if someone really wants to work, their job should be how do we help them do that.

Will felt that many people especially in the DD / ID community have avoided the traditional DOR supports as they do not fund the areas where DD/ID folks need supports, such as developing social skills, employability skills, identifying what someone really wants to in their discovery and exploration stage, doing assessments for folks to really help them understand what is going on and supporting them with opportunities like paid internships in order to gain employment experience. Will had hired one of his clients as a data entry clerk for three months so he had the work experience to help him gain regular paid employment elsewhere.

Under the new SDP, if someone wants a job, they can hire people to support them - to work on your resume, your interview skills, making connections with folks, going through paid internships and alternative pathways to establish your employability. Will points out how the last 10 months of the pandemic has revealed how flexible employment can be in ways traditionally not possible before.

He felt one of the issues as we enter this new market, is to create an adequate staff supply given the huge numbers of disabled individuals entering the adult world each year in addition to the retiring baby boomer generation who will need extensive staff support in the next 10-20 years.

Another issue will be not only having enough experienced support people, but also to ensure that such experience does not translate to, “this is the way we’ve always done it.” Instead, it should be about, “how do I support you to do what you want to do.” This will especially be true of existing services providers used to the traditional mindset and now moving into the new SDP space. So SDP is about helping build that support system into our staff and understanding what that looks like as well as looking out for folks differently.

Will underlined that the big challenge right now is making sure that the new system truly prioritizes individual control. This is why Will is working with NeuroNav to build a stronger navigator community that really understands how to support people, their community, and their community resources. It's more a matter of how do we help people succeed, rather than slotting them into a traditional system.

By Hari

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