On December 3, Doug Pascover, Director of Imagine Supported Living Services, and David Grady, Regional Manager of the State Council on Developmental Disabilities, Central Coast, presented a PEP workshop on Working with an Independent Facilitator, who is a person who supports neurodiverse individuals and their families in the Self-determination process. As of July 1, 2021, every person served by the Regional Center can choose to have a self-determination plan instead of the traditional service plan. It is completely voluntary. Self-determination is about: being in control of your own life, making your own decisions, having hopes and dreams for the future and setting goals, and leading a life of your own choice.
Doug and David started their presentation with a definition of an independent facilitator (IF): a person, selected and directed by the participant, who is not otherwise providing services to the participant in their Individual Program Plan (IPP) and is not employed by a person providing services to the participant. The independent facilitator can assist the participant in making informed decisions about the individual budget, and in locating, accessing, and coordinating services and supports consistent with the participant’s IPP. The independent facilitator is available to assist in identifying immediate and long-term needs, developing options to meet those needs, leading, participating, or advocating on behalf of the participant in the person-centered planning process and development of the IPP, and obtaining identified services and supports.
Independent facilitators receive training in the principles of self-determination, the person-centered planning process, and other responsibilities. An IF can be paid or non-paid, and it is not required to have an independent professional act in that capacity. That role can be fulfilled by a family member or volunteer, or in some cases, by a Regional Center service coordinator.
The presenters then shared some important points about what to look for in an independent facilitator. A good practical definition is a person with the skills that are needed to make an individual’s program function well and that are not available in the natural circle of support. The neurodiverse person and/or their family should consider: what can you do well yourself and what do you need help with? Find someone who can give you the support you need. The more honest you are with yourself about what you can do and where you need support, the easier it will be to find the right IF. Also consider that an IF cannot provide any other support, so exclude anyone you might want to do other paid work.
Doug and David also shared some practical considerations about working with an independent facilitator, including rate information, hiring practices, having a written agreement and standards of conduct, as well as job duties and cultural expectations. The neurodiverse person and/or their family should complete an agreement form with the IF so that all duties and expectations are clearly defined.
One of the main roles of the independent facilitator is to help the neurodiverse person and/or their family move from preferences to reality, and support them in prioritization. If the funding in the budget won’t support all the goals at once, the IF helps to create a plan to build a path forward toward including other services in the future.
Some things to consider in the role of an independent facilitator include the person’s:
Knowledge of the self-determination process and the Regional Center system
Understanding of the neurodiverse individual
Knowledge of community services
Knowledge of hiring, training, and providing disciplinary support to staff
Ability to negotiate with providers, vendors and/or the regional center
Strong skills as a manager
Having a mutual relationship of trust with the neurodiverse person and/or their family
The self-determination program is required by state and federal law to be “cost neutral.” In most cases, this means that the SDP budget will equal the cost of existing services now in use through the traditional system (with exceptions.) Self-determination, through its flexibility, can be much more efficient with the allocated budget than the traditional system. Seeking extra funding as “unmet needs” or “change of life circumstances” (the main exceptions noted above) can be appropriate but invites the regional center to extra scrutiny of the spending plan, leading often to very long delays both during the transition and at renewals. It will often be worthwhile to settle for the previous 12 months' spending.
There are many positive aspects of participation in the self-determination program, with the support of an independent facilitator:
Many people are finding new ways to foster long-postponed goals and ambitions
Many people are creatively developing more person-centered care for themselves
Many people report a high level of satisfaction and many can support higher wages through the sole-employer or co-employer models of care
The number of IFs available has grown a great deal over the first years of the program. That should make it easier for people and their families to find useful, culturally competent, and affordable support.
Given that the self-determination program is still evolving, there are also some challenges to keep in mind:
Development of the budget and approval of spending plans often takes a long time. When renewals are late to be authorized, providers may go months unpaid. These interruptions may be the fault of individuals, families, regional centers, FMSes and/or the Department of Developmental Services but the damage can be extreme in creating unnecessary loss of providers of support.
It is questioned whether the program has been cost-neutral as implemented. This may endanger the long-term viability of SDP and make worse existing disparities across demographic groups.
The number of available FMSes has been shrinking which makes choice and quality a challenge. The limited number of FMSes are struggling to find enough staff to effectively manage their role. Many FMSes have waiting lists.
Doug and David both encouraged families to reach out for further support:
Doug Pascover, Director, Imagine Supported Living Services
David Grady, Regional Manager, State Council on Developmental Disabilities, Central Coast