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SANYS Comments on OMRDD's June 09, 507 Plan

1. Introductory comments--President David Liscomb
2. How can we support more employment?
-- Presented by Shameka Andrews
3. What steps can we take to make the system more person centered? -- Presented By David Liscomb
4. What is working? -- Presented by Marilyn Stata
5. Final Written Statement--From Me to We! Yes We Can! -- Presented by SANYS Executive Committee
6. Individualized Supports Think Tank 2009 Recommendations--June 09

INDIVIDUALIZED SUPPORTS
THINK TANK

Work * Friends * Home * Health
Moving Forward: 2009 Recommendations 
for the system of supports funded by OMRDD

Vision: The Think Tank promotes the development of sustainable, individualized, self-directed supports that result in community inclusion for people with disabilities in one if not all of the Eight Valued Roles of citizenship:

Employment, included volunteer community service

College life and self-advocacy leadership roles.

Neighborhood and community member ship.

Creative arts and careers.

Rich and mutually supportive relationships with family and friends.

Individualized homes:  life sharing, choices of roommates,

self-directed supports, parent associations.

Spirituality.

Adventure, health and sports.

Statement of Beliefs and Principles:

Development in all eight directions requires attention to sustainable person-centered planning, innovation, local solutions, and learning circles that emerge from the following beliefs:

That employment is for everyone and should be an expectation for all.  We need to use customized employment principles for all aspects of community inclusion and broaden concepts of work to include, self-employment and creative arts as career paths.

That people should know what resources are available to them via Individual budgets and that these funds must be self-directed towards inclusion and portable.

That information about all options needs to be readily understandable, in people first language; we must remove the complexities and bureaucratic language. We must present information in multi-cultural and multi-literate, audio-visual formats.  We must create easy ways for people to access information via the internet, so that they can be active participants in the design of their own supports.  We must support people to grow in learning networks where they can help each other.

That person-centered plans which lead to community membership and friendships should be generated by people and their families with help when needed, and that competent facilitators should be readily available to them. 

That people with disabilities, their families, support workers, providers, and government allies must co-create these new arrangements from which others can learn, and that the process should include NON-AGENCY approaches that include the use of natural, family, and community resources, and circles of support. 

That OMRDD and providers must realign resources—funding, staff, energy, regulations, monitoring, staff training and education--to be consistent with this vision.

That direct support professional staff are key people in the lives of people with developmental disabilities. With neighborhood and communities the desired environment for people with developmental disabilities, staff who provide day to day supports have taken on new and complex roles.  Working in small and often one to one settings staff must exercise independent thinking and keen judgement. Good direct support professionals are in high demand and need to be well trained and well compensated  to provide quality supports.

That interagency collaboration fostered by the Most Integrated Coordinating Council is very important to the coordination of supports and efforts across systems.

Implementation:

We think that options for individualized support should be consistently available throughout NYS state, however with great variety given regional capacities and differences.

We think that the portal should be launched as a learning laboratory, and that each region needs to experiment and create together effective teams that develop mutual respect, partnerships, and concern for creating responsive options that really work. 

Individualized supports should be flexible so that they can be adjusted easily as needs change.

We need to have back up resources and options to address life and health changes, emergencies, break downs, and new opportunities.  Concern and dialogue about safeguards should be worked out through conversations, not thru rules and regulations.

The Portal should be the MAIN door, not just one of several; it should allow entry of new people and re-entry of folks who already receive traditional services, and so the system should constantly be expanding each person’s knowledge of choices in supports/services.

This will require:

Reduce rigid service category distinctions:  make them fluid.

Reduce rigid funding buckets, and instead use block grant style funding.

Keep options open:  don’t rule out anything based on rigid ideologies.

All planning must include back up plans for when something goes wrong.

Don’t rule out more traditional, certified sites if they work for the person.

Make it possible for people who are in traditional services to access/enter the new.

People who want these new options need to have knowledgeable, welcoming, energetic people to meet them at the door and walk the journey together.  We   need to support many allies to be dedicated in every sense.

OMRDD needs to continue investments in “learning laboratories” and mutual support networks for the people who want to be “the explorers.”  These new options need to be true innovations, the best that we can be by working together.

There should be an open conduit to OMRDD for feedback on how it’s working-- multiple, continual conversations about how things are really going--and how to make it better for people.

The complexities of the system should NOT be passed onto the people with disabilities and their families!  OMRDD and providers must find ways to shield families from the bureaucracy. 

We need to continue efforts to find solutions to challenges posed by Nurse Practice Act.

Implications for OMRDD PORTAL and the Wavier Renewal: 

The waiver needs to allow for multiple, flexible supports that will enable people to live “real” lives.

Our entire system must embrace inclusion as a fundamental value:  it can’t just be for a separate “class” of people who enter the new portal!

However, those who enter the new portal will be leading the way for all people to learn more about the supports that sustain inclusion over time.

The new wavier should create a more holistic vision and definition of health. 

There should be an expectation for personal responsibility of the person with a disability; he/she cannot just be a passive recipient of services.

People should have options for MSC support and brokers who can be truly independent.

NYS should ask for MORE in its waiver

Implementation and advocacy has to be done with knowledge of the federal and state regulatory context.


 
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