As a provider of direct services that people control (residential, non residential in home and community support and community participation services) as well as supports broker services (supporting people who self direct their services using a fiscal intermediary), our experience in ‘managing’ this crisis indeed looks very different than what I too am reading on this listserve.
Because every person and family is in charge of their services, including who works with them, what they do and when they work, etc., planning for what to do now to prepare, and what to do when things are not going so well, has been a true partnership between the person, their family and their staff supporters.
So far, there has been no interruption of service unless the person or their family has asked for us to not come to their home and in that case we are paying the staff member for at least the next two weeks, and then our next stage of planning will go into effect.
For people who do not have family readily available to support them, or no family members at all, we are speaking with every staff supporter and providing incentives such as a daily stipend for whoever is comfortable and is able to live-in temporarily and provide support. Other creative ideas are emerging through these conversations with both support staff and most importantly, the people who choose to receive support through us.
Our leadership team is meeting every morning (including Sat and Sun) to update on the health status of people supported and staff, and to update on changes to our state’s policies. We’ve been clear that this is about the health of everyone, that our commitment is to do what’s right for each person, and we’ll deal with the regs and rules later. We are also holding weekly webinars for all employees, families and people supported -- this has been an excellent forum for sharing ideas, questions and concerns.
One of our organizational values is transformation and we definitely see this situation as an opportunity to demonstrate the importance of putting people and their families in charge of their services and supports. The fact that these ‘day programs’ have closed is a function of congregate services failing to meet individualized needs/wants — it is indicative of this approach to serving people in groups just being ineffective. We must find another way, and that way is becoming clearer and clearer.
We are happy to share more specifics. Join us on a webinar facilitated by the Alliance for Citizen Directed Supports, a membership organization dedicated to advancing self direction, and innovation in disability supports. Consider becoming a member of the Alliance and join forces with people with disabilities, their families and their agency supporters as we work together to make self directed services a reality for all.
Marian Frattarola-Saulino, MSW
Co-Founder | Executive Director, Values Into Action
Board Chair, the Alliance for Citizen Directed Supports
Board Chair, the Collaborative for Citizen Directed Supports-New Jersey