People with disabilities have long suffered the consequences of poorly designed programs that have rules created by people with no insight into the lives of people with disabilities. Even when well-intentioned, we know that when programs are designed or rules are made about us, without us the results are almost always unhelpful at best and disastrous at worst. For that reason, our advocacy training and mentoring programs prepare and support people with disabilities (and our close allies) to be directly involved in policymaking. Policy advocacy involves having our advocates serve on boards and committees (sometimes as appointed members, often as outside participants). These include rulemaking boards, advisory councils, work groups, and more. Some of these groups are ongoing and some are ad hoc. We get involved with the process, sometimes from the very beginning where we can influence the development of a program, policy, or process. Sometimes we are responding to a proposal that has already been developed. Sometimes we see a problem and go to the state and ask for a process to make a change.
The way individuals with intellectual and/or developmental disabilities are assessed in this system is often times cumbersome and ineffective. CCDC challenged the process through our individual advocacy program, then wrote a white paper that outlined the issues and presented alternative approaches. We then participated in a workgroup with the state to revise the assessment process for all Long-Term Services and Supports which resulted in legislation being passed that assures that the current assessment goes away.
CCDC noticed that when changes are made at the state level, serious gaps and errors in planning occurred. While unintentional, these changes can often have devastating consequences. To address this, CCDC and two Arc chapters worked with the state Medicaid agency to create a Checklist for Positive Change. We encourage the use of this form before changes are implemented to make sure no harm is done, or if harm is necessary (e.g. budget cuts, enforcement of federal requirements, etc.), that it is planned for and mitigated as much as possible.
When a bill becomes a law, a state agency is tasked with its implementation. This is when the work becomes policy advocacy. This can be approached any number of ways, including promulgating regulations and participating in oversight committees, which is a complex process. We must constantly be aware of restrictions, the review process, audits, reporting structures and requirements, and the nuances confining the legislative oversight committee process.
In 1996, CCDC was the lead organization that created the Consumer Directed Attendant Support (CDAS) pilot program. It took until 2001 to implement this model that was both delivery and payment reform, as it allowed people with disabilities to bypass home health and personal care agencies and hire people directly using a fiscal management service. There was an advisory committee that worked with the Department to implement this pilot program. It was very successful.
In 2005, the Legislature passed a bill that allowed CDAS to be expanded as a permanent service delivery option in Medicaid. The legislation allowed for expansion to all waivers and allowed this delivery methodology to apply to other services.
In 2007, the pilot ended and the state agency asked for a waiver amendment to make this a permanent program, which is now the Consumer Directed Attendant Support Services or CDASS. This involved many policy changes and working with the federal oversight agency.
In 2009, the state changed Fiscal Management Services companies. That transition and some other management problems caused the disability community to go to the JBC and as a result, a new and stronger oversight group called the PDPPC was created. Now, the result is that all policy related to consumer direction of any sort must now be vetted by The Participant-Directed Programs Policy Collaborative (PDPPC).
In 2014, CCDC led the charge to assure that clients had a choice fiscal management agent and that training was conducted by a separate company.
In 2015, when the Fair Labor Standards Act required us to make some major changes in the program, CCDC and others took a major role in making sure we kept the integrity of the program intact. Our current goals include expanding access to the program to people with developmental disabilities and families with children. We also want to see a consumer-directed delivery option for all long-term services and supports. Preserving and protecting the ability to manage our services (and therefore our lives) is always a priority for CCDC.