Meaningful Outcomes That Matter To Us
We all want better lives for ourselves and our family members with developmental disabilities. But how schools and regional centers define better outcomes often differs from the way we think about it.
- Instead of being segregated and stigmatized, we want to be included and valued.
- Instead of being taught in one-size-fits all classrooms, we need instruction that is individualized to our needs so that we can realize our potential to learn.
- Instead of having no choices in where we live, who we live with, and who cares for us, we want to be in control.
- Instead of most us being unemployed and living in poverty, we want to do meaningful work and be compensated appropriately.
- Instead of being victims of astounding rates of physical, sexual, and verbal abuse, we want to be safe and treated with respect.
- Instead of living in isolation and without social relationships, we want to be happy and have friends.
- Instead of having preventable chronic health conditions, we want to have healthy and active lifestyles.
- Instead of being ignored when in a crisis, we want a safety net that addresses our mental and physical health needs in an urgent manner.
A significant barrier to achieving these better outcomes is that the systems that support us often don’t focus on or measure what matters. We often confuse compliance by a service provider with the progress of the individual they serve. Just because a provider checks a box on a form doesn’t mean that we are making progress. The systems need to take the lead from us, the individuals and families, on whether we are moving forward and what we think is important for our future.
Goals and Actions:
Better lives for ourselves and family members will only be achieved if we know how students and individuals with developmental disabilities are really doing and making sure that regional center and school systems fund supports and services that move us toward more meaningful outcomes.
This will require a significant shift for many systems to:
- Analyze, measure, and publicize the current outcomes of students and adults with developmental disabilities in critical and meaningful areas;
- Change our systems so that they focus on and hold systems accountable for achieving those meaningful outcomes.
First, we need to take a very good, honest look at where we are. We can use the data we have to touch individual lives by ensuring that we measure what matters:
- We can measure not just how many individuals are getting how many dollars in services, but that those services accomplish meaningful outcomes.
- We can measure not just how many “contacts” are made with individuals, but that there is a respectful, responsive, and satisfying relationship with the regional center staff who serve us.
- We can measure not just that Individual Program Plan (IPP) and IEP (Individual Education Plan) goals are not met and then repeat them for another year, but that we analyze WHY they were not met and what will change to ensure they will be achieved.
- We can measure whether the therapies and programs that are offered actually lead to the goals that individuals and families choose.
- We can measure the resources we spend on crisis versus the resources we spend on securing adequate resources to prevent the crisis.
- We can measure, if there is a crisis, how quick the response is to the individual and if that response helped resolve the crisis in a reasonable amount of time.
- We can measure whether individuals and families are happy, healthy and safe.
Second, we need to work hard to change and improve our systems to reach those outcomes:
- We can require true partnerships between individuals/families and teachers, service coordinators, therapists and service providers.
- We can encourage flexibility and innovation in the types of services provided.
- We can collaborate with employers to provide incentives to increase employment.
- We can work with regional centers to develop vendor contracts that require meaningful outcomes—so that payment is tied to performance and client/family satisfaction.
- We can advocate in the health care system and provide education and outreach to ensure that there is equitable access to high quality health care.
- We can promote funding of social recreation programs to improve social and emotional relationships and connections.
- We can petition elected and appointed officials to provide oversight to ensure value – that is, what we pay for gets the outcomes we seek.
- We can demand that our systems do the work to improve programs and services that support our individuals and families to become healthy, happy, valued, educated, employed, financially secure, satisfied, and safe.