Task Force/OMRDD Meet
to develop a plan to make
self-determination happen!

Self Determination is a learning process and systems change process. The biggest thing we've learned so far is how much change is really needed.

In October, the Task Force and OMRDD met in Albany to review the status of self-determination in NYS and to identify barriers to full implementation to self-determination. The various statewide committees (Service Coordination, Fiscal, Quality/Safeguards and Circles of Support) al met during the month of September to collect information on "What's Working, What's Not" and to identity possible barrier removers. Each committee provided a report at the October Planning Session which was used by the full group to develop priority areas to be addressed and to offer possible solutions. The information from this planning session is being complied and will be provided to each committee as well as to designated OMRDD Central Office personnel for action.

Service Coordination

Providing service coordination to people in self-determination requires additional and new skills as well as an increased time commitment.

Helping someone set up a household or a job without using existing systems like IRAs and workshops takes more time. So does helping people create circles of support, constructing real personal life plans and budgeting. The organizations that offer service coordination aren't getting paid enough to let service coordinators spend more time working with fewer people. Service coordinators haven't had enough training in these areas.

Solutions:

OMRDD needs to evaluate if the current Medical Service Coordination (MSC) program is structured in a way to support service coordinators supporting people in self-determination. Alternate methods need to be explored. Use of support brokerage should be encouraged if the financing is within the person's budget. OMRDD needs to do a lot more training, with service coordinators using the expertise of experienced service coordinators actually solving real problems in creative ways.

Safety

People with developmental disabilities need their rights to life, liberty and pursuit of happiness protected while being as safe as possible as they live, work, and play in the real world.

The system has systems in place to promote safety, but the system often doesn't protect people's rights to be free. Most people with disabilities, like most Americans, are willing to trade absolute safety for greater freedom, and with cases like L.C. v Olmstead, they are taking their views to court. Folks at OMRDD who are used to "safety first" have trouble figuring out how to put freedom first instead. Their first try put too much responsibility on circles of support, making it hard to get people to join circles.

Solutions:

Self Determination participants and their circles need to do a better job of explaining in their plans how they will deal with health and safety issues. OMRDD needs to understand how existing safeguards like service coordinators and DDSO oversight can support Self Determination without holding volunteers liable or violating freedom and privacy.

Fiscal Issues

There were many issues identified within the fiscal realm. People in self-determination need individual, flexible, portable budgets. The pilot has shown this is a major undertaking for OMRDD in that it is contrary to traditional funding methodology. Issues with providing fiscal intermediary services were also identified; the most prevalent is the definition and function of the fiscal intermediary.

OMRDD has developed a draft policy paper called Consolidated Supports and Service (CSS) to address, among other issues, the issue of individual, flexible portable budgets (personal resources accounts-PRA) with a process to bill through the HCBS Waiver.

New York State's Division of Budget (DOB) has to approve the CSS before it can be used. DOB is taking a long time to approve the CSS. Without the PRA, OMRDD must fund self-determination budgets using traditional funding methodologies. Since traditional funding methodologies are narrowly defined, it presents many challenges to use them to create an individual budget.

Right now, people in self-determination are using "new money" from the NYS CARES plan. OMRDD needs to insure long term financing for self-determination.

Solutions:

OMRDD should consider establishing a discrete allocation for self-determination, possibly on a limited basis to promote implementation of self-determination for currently enrolled persons. Absent the PRA, this may be the only option for funding some individual budgets.

DOB could let people in the pilot use money the way they would if the PRA were approved-in other words, pilot the funding as well as the services-so they can see how well the PRA will work. OMRDD needs to plan for the future when most people with developmental disabilities will not live in group homes. It needs to help agencies close houses that people don't want and put the money into services that they do want.

Circles of Support

In general, the concept of a circle of support is thought to be a key factor to the success of an individuals successful pursuit of his or her dreams. Circle members bring positive energy, creativity and resources into the person's life. They are a natural entity to be the first line in addressing safeguards.

The priority issues related to circles of support seems to stem from the responsibility and expectations that OMRDD has placed on circle members as well as general workload issues and concerns of liability. The exception of everyone having a "strong" circle was also questioned.

Forming, facilitating and maintaining circles was noted as critical yet many people lack this skill. Many people who grew up in segregated settings don't have real friends or experience in making choices. The principles of Self Determination- freedom, authority, supports, and responsibility-can all be achieved by individuals working with one or two trusted friends, relatives or even just a service coordinator. People who do want circles have trouble finding people who have time and dedication for the task, and circle members aren't always getting enough training or information.

Solutions:

Over time, we need to make sure everybody served by the system does real person-centered planning and has opportunities to make friends in the community. From the pilot, we have very limited experience with the role of a circle of support. We need real experiences with circles to learn what is realistic and do-able. We need to strike a balance with the expectation of the circle and the responsibility of the system. Training and support are critical.

Leadership and Planning

Self-determination requires significant system changes. To date, there hasn't been a clear plan for what system changes are needed and how they will be accomplished.

Implementation of self-determination requires involvement from all aspects of the system: operations, fiscal, quality assurance, policy setting, etc. The active involvement of people in decision-making positions is crucial to the success of this system change. OMRDD has committed to reviving the statewide committee of consumers and professionals that work on different issues and to reinstating the overall Advisory Committee.

We know how hard learning new ideas and making changes is. We are lucky to have so many people in and out of OMRDD who truly believe in self-determination and want to make it happen for all New Yorkers with developmental disabilities. The hardest part of that job is putting ourselves forward to get other people believing in and excited about it. That's what the task force will be doing over the next few months.

For more information on the future direction of self-determination in NYS, contact Tony Phillips or Janet Austin, Task Force Co-Chairs, Steve Holmes, SANYS or Gary Lind, Margaret Sellers or Trudy Fletcher from OMRDD.