Reading all the information you can find about the California (CA) Self-Determination Program (SDP) can do wonders to prepare you and your loved one for the journey. Some quirks about the SDP, however, are unknowable to most participants until they come face-to-face with them.
These “unknown unknowns,” if you will, can cause frustration during the transition to SDP. We wanted to highlight some of these quirks, and we figured the best way to shed light on them was to go directly to the parents and loved ones of current SDP participants.
NeuroNav recently conducted a webinar with three panelists who have firsthand knowledge of the SDP and know what it’s like to have a loved one participate. They had some amazing pieces of advice, and we’ve compiled some of them below.
Ruth, a mother of an SDP participant with Down syndrome and epilepsy, advised webinar participants to take the process steadily and move at a pace that gets results. Being adaptable, Ruth says, is vital.
She also acknowledged that setting things up with the SDP can bring up intense emotions; after all, your loved one deserves the best services.
Ruth also emphasized the importance of asking the right questions and articulating yourself as clearly as possible so you can effectively communicate your loved one’s needs.
We were fortunate to have Susie, the parent of an autistic trans SDP participant, as a panelist to share multiple insights. Susie has worked in special education for many years and actually received training to become an independent facilitator.
Susie mentioned the importance of person-centered plans (PCPs). These plans aim to help SDP participants anticipate their future needs in the context of their dreams and desires. PCPs promote independence and self-determination.
Her reason for emphasizing PCPs is that they can serve as the foundation for everything participants build during their time in the SDP. PCPs help inform individual program plans (IPPs), individual SDP budgets, and SDP spending plans. Having your loved one think about their futures, Susie said, is a great exercise.
Another piece of advice Susie offered is to hire an independent facilitator (IF) who works at a firm with other IFs. She mentioned that solo-IF offices may leave clients vulnerable if the sole IF decides to permanently close up shop or is suddenly unable to perform their duties.
Katherine’s son, who uses the SDP, has intellectual disabilities and experiences seizures.
Even though Katherine had worked in human resources and administrative roles for years in the corporate world, she said she still found the SDP process challenging at times.
Katherine emphasized the importance of relying on your IF, Regional Center representatives, and other individuals who are familiar with the industry's specialized terms, which she described as “a whole other language.”
If there was one common thread running through each panelist’s answers, it was this: getting started with the SDP can be complicated and confusing.
Independent facilitators can advocate for participants at every step. From coordinating services and supports to negotiating vendor pay rates, your IF is your greatest asset. NeuroNav is one of the leading IF firms with deep experience interacting with California’s SDP, and we would love to speak with you about your options. Schedule a consultation with us at your convenience to hear more.