Effective Provision of Supports, Choice, and Network Capacity
Question #1: How would you recommend evaluating the adequacy of a person
centered plan to ensure it appropriately addresses the changing life needs of an
individual receiving supports; including building and maintaining naturally
supportive relationships, addressing future and contingency planning, and building
models of support most in line with an individual’s expressed interests and needs?
Please describe specific measures that you feel would be appropriate to make such a
determination, where possible.
SANYS forum participants contend that the people who devised the plan and live it are
the most effective evaluators of its adequacy. They can best say whether the plan’s
outcomes are being fairly supported by the DISCO and effectively implemented by
providers. Success depends on two crucial elements: 1) there is a meaningful person
centered plan that demonstrates a deep respect for, and understanding of, the individual’s
needs and interests; and 2) funders and providers are responsive in arranging and
coordinating the supports and services necessary for the plan to succeed.
In this context, these criteria bear on the effectiveness of a person-centered plan:







Sufficient time and resources have been devoted to developing rich and
meaningful person centered plans. Individuals have a circle of supporters, staff
(including brokers) and advocates well trained and fully supported to do in-depth
planning.
There are regular opportunities (scheduled and as necessary) to review the plan,
alter it if necessary and adjust the services/supports needed for the plan.
DISCOs and providers by their actions demonstrate genuine interest in
supporting the person centered plan without bias toward fitting the plan into preexisting program models.
Individuals and their circles have been offered information on all
services/supports options that are available, or could be created, to achieve the
plan’s goals.
Individuals and their circles have choice of providers, including the chance to
change providers without consequence to services or resource allocation.
The predominate focus of evaluations should be outcomes. “Process”, while
important to ensuring results, should be a secondary measure of quality. Tools to
measure outcomes should be thoughtfully designed, easy to administer and reveal
individual satisfaction and systemic performance of funders and providers.
Evaluations must be done by third parties that have no fiscal stake in funding or
implementing the plan.
Questions 2 & 3: 2) How would you afford individuals with developmental
disabilities and their family/advocate the opportunity for choice related to DISCOs
and service providers within a care management environment. 3) What
mechanisms would you put in place to evaluate the adequacy of the opportunity for
individuals with developmental disabilities and their family/advocate to have choice
in providers? The choice of providers should incorporate cultural and
programmatic diversity and clinical experience in the unique medical and clinical
needs of individuals with developmental disabilities, in regions of the state which
have limited participating providers.
Questions 2 & 3 were combined as they are closely related. Regarding choice, SANYS
forum participants had the most consistent and strongly expressed views of any question.
They are excited about OPWDD’s commitment to choice and see choice as the waiver’s
most powerful transformational strategy. At the same time, they are aware of many
attitudinal factors and practical barriers that now limit the full realization of choice.
They urge that choice be not just a rhetorical statement of intent, but a tangible
achievable option for every individual.
At the same time, SANYS is skeptical of the practicality of offering choice of DISCOs.
We envision that DISCOs should be regionally based to be in geographic proximity to
individuals and providers. We think that choice of DISCOs will have little practical
meaning to individuals and believe that most emphasis should be placed on choice of
providers and customized support options.
SANYS forums contributors believe these factors relate to providing real choice.









Choice can be advanced only through real person centered planning that results in
individualized budgets that lead to personalized support plans.
Deciding where one’s resources will be spent is the most powerful expression of
choice. There must be absolute portability of budgets.
Meaningful choice requires full information and knowledge of options. DISCOs
must proactively provide comprehensive information about the full range of
supports.
Choices should not be limited to the “menu” of existing services. Individuals and
their circles/advocates and agencies must have real flexibility and practical
technical means to custom design supports to meet individuals’ choices.
Individualized self-directed services are so little used in NYS that the option to
explore self-direction is significantly hampered by lack of knowledge. OPWDD
and DISCOs must aggressively make self-directed or self determined supports
widely known and more easily accessed.
Informed choice also requires that OPWDD and DISCOs provide individuals and
their circles easily accessible information about the quality of providers’ services.
In many regions choices are limited by a dearth of providers and specialized
services. OPWDD and DISCOs must be creative to expanding choice options
where these conditions exist.
Provider refusal to serve an individual should be limited. Bias should be in favor
of the individual’s right to the provider of his/her choice.
Choices should include non traditional supports and services that are funded by
the DISCO, e.g. generic senior citizens programs, community recreation programs
like YMCA’s, civic organizations, etc.





There is great concern that DISCOs who are also service providers will, overtly or
otherwise, steer individuals toward the services they provide. As discussed later,
there is much skepticism whether any “firewall” can truly guard against this
tendency.
Individuals supported in existing (residential or day) programs are inhibited from
trying new support approaches for fear that a new support approach might fail.
Individuals and their families are rightly concerned about “what happens if this
doesn’t work out?” OPWDD should determine how to guarantee fallback options
so that people are willing to try choices that involve some risk.
The choice of continuing to be supported by one’s family is limited by funding
and program constraints. OPWDD should closely reexamine funding for the
Family Support program and increase its flexibility.
Residential choices for non-congregate living are limited by the lack of affordable
appropriate housing. OPWDD should aggressively pursue the development of
and broader access to generic housing that can be combined with residential
supports tailored to individuals’ needs.
Shared living is an approach that would afford more opportunities for nontraditional living arrangements. OPWDD should pursue new approaches for
shared living and the changes in law, regulation and funding that will make shared
living a possibility.
Question #4: The opportunity for individuals with developmental disabilities (with
support from their family/advocate, if necessary) to self direct their supports and
plan of care is an integral expectation in the People First Waiver. How do you
recommend ensuring that self-direction of resources and support plan is
streamlined and readily available to individuals?
Self directed (and self determined) services could play a major role in achieving the aims
of the People First waiver. The toehold that self-directed services have gained in recent
years could quickly and substantially be expanded to provide a cost-effective alternative
to traditional services. This can be accomplished now, even before the People First
waiver is approved and fully implemented.
As stated elsewhere, the growth of self directed services requires training and
competency building that could be provided by “Regional Centers for Innovation and
Training” that should be funded by OPWDD.
The participants in the SANYS forums offered many suggestions for advancing
awareness of and interest in self directed services.



The most prominent recommendation to increase self-directed services is to
streamline its overly complicated and cumbersome administrative processes and
make accessing it substantially easier to navigate.
Self directed budget categories should be broadened and funding more flexible.
The burdens of managing self directed plans are limiting its attractiveness to
individuals and families. Self directed services would grow by advancing the





“agency of choice” concept to utilize agency staff to assist in implementing and
maintaining self directed plans.
DISCOs could advance self-directed services by keeping a clearinghouse of staff
available and qualified to provide supports to individuals.
The availability of well-trained support brokers is essential to advancing selfdirected and self determined services.
OPWDD and DISCOs must give provider agencies fiscal incentives and the
technical process means to convert resources from traditional models to self
directed services.
OPWDD and DISCOs should facilitate self-determination in services that are not
entirely self-directed. Self determined services encompass the opportunity to
utilize one’s individual budget to buy part or all of a provider’s services in a
customized way.
If the People First waiver and the DISCO structure are intended to promote
greater balance in the service system, particularly an increase in self directed and
other innovative services and less reliance on congregate services, there should be
quantitative goals and measures of progress in advancing these services.
Question #8: A key hypothesis of the waiver is that a fiscal structure that provides
resources based on a consistent need assessment process will incentivize the
development of innovative support plans that are more aligned with individual’s
interests and needs and which ensure that resources are allocated equitably. What
innovative models of support have you heard about, implemented or would
recommend within the People First waiver that would be consistent with this
hypothesis?
There are many opportunities to advance innovative support plans that are cost effective
and satisfying to individuals and their families/advocates. Innovation has been
constrained by a number of factors identified by the SANYS forum participants. Among
these is lack of knowledge of the current availability of innovative options, the
overwhelming bias in New York’s regulatory and financing structures toward traditional
congregate services, the inability to readily convert existing base resources to alternate
uses and the limited exploration of innovative approaches used in other states and
countries.
With regard to innovation, and many other aspects of system transformation, SANYS
believes that objectives sought through the People First waiver cannot be accomplished
without significant “seed” funding to restructure or retool the existing system. To expect
that such a major redirection of supports and services will be accomplished without
investing start up resources is not realistic. We urge that serious thought be given to how
“seed” money can be provided to aid in transformation, including funding for research
and development.
Similarly, and as we stated earlier, we see it essential to provide real opportunities to
explore innovation. The Learning Institute is an example of how innovative models can
be incubated and spread. We firmly believe that there should be entities we are calling
“Regional Centers for Innovation and Training” set up around the state to push the
innovation envelope as far as possible.
The forum participants offered a range of recommendations to advance innovative
support plans.





OPWDD must work hard to assist agencies in adopting innovative services.
Agencies should be encouraged to and supported in reinvesting resources into
innovative models. DISCOs should be judged by their success in advancing selfdirection and other innovative services.
OPWDD should look at models in other states such as: New Jersey – Real Life
Choices; Wyoming – Doors program; Wisconsin – IRIS; the UK – shared living.
Look to national leaders in innovative services: Beth Mount, John O’Brien, and
Michael Smull.
Look to innovative agencies in NYS: Rensselaer ARC, Onondaga Community
Living, L’Arche, Job Path, etc.
Support initiatives like the Learning Institute for advancing understanding of
innovative individualized services. Be certain that funding is made available to
implement innovative approaches. Be willing to invest resources for research and
development of new supports, even where there is a risk of failure.