Strengthening Services and Supports to Individuals with Developmental Disabilities and Their Families in Georgia
April 8, 2005
“Quality is determined by responsiveness to
the person served rather than compliance with organizational process or
regulations and standards.” - James F. Gardner and Sylvia Nudler
Over the past 15 years, several commissions and reports concerning the
needs of people with developmental disabilities and their families have
identified a series of recommendations, many of which have never been
implemented. Renewed efforts must assure that people with
developmental disabilities and their families receive quality services. This document proposes action steps
to guide the development of community services. State services must be safe, efficient, accessible, and tailored
to individual needs and choice. Service
provision and quality assurance must be integrated. Families should expect that services be obtained within a
reasonable timeframe.
The Governor should create a Freedom
Initiative that would result in a conceptually coherent policy for integrated life
in the community for people with disabilities and the people who support
them.
The system redesign must begin with a vision that is founded upon
beliefs of what is possible for people and their families. The
vision of services and supports for people with developmental disabilities
begins with Community First and holds that individuals have access to real
homes, real jobs, real learning experiences, and real choice in their
lives. The system should reflect and
promote consumer values of dignity, independence, individual responsibility,
choice and self-direction. This means
that the focus of funding and service planning is on the individuals who use
those funds and services, and not on the services themselves or providers. It also means that while the State may not
directly fund natural or community-based supports that are outside the formal
service system, they can provide resources for infrastructure (such as
transportation), information dissemination (such as a comprehensive resource
database) and training (such as for peer support, support brokers and direct
support workers).
The initiative
should be both comprehensive, and organized in incremental stages so that
particular elements are introduced in the system each budget cycle, and each
element is structurally related to previous developments.
Gwen Skinner,
Director of the Division of Mental Health, Developmental Disabilities,
Addictive Diseases outlined the following values in a presentation to the Aging
and Disability Symposium on November 18, 2004:
·
We believe
that dependence on government is not good enough for our consumers. We value independence and
self-determination.
·
We believe
that working people and their families are always better off than non-working
people. We value self-sufficiency.
·
We believe
that institutions are not the best places for people to live and grow in. We value community.
·
We believe
that government has to be a resource to families; not a substitute for
them. We value helping families support
their loved ones.
·
We believe
that people – with the support of family – should make the important decisions
that affect their lives. We value
individual dignity and personal freedom.
The State of Georgia policy and budget decisions involving services for
people with developmental disabilities and their families are based on the
following vision included in the Olmstead Report.
“The State of Georgia will
foster the statewide development and implementation of comprehensive long-term
care and support system of services that maximize the independent living
philosophy and quality of life while recognizing the need for interdependence
and support. The system will provide
individuals across the lifespan and families (when applicable) with meaningful,
informed choices of support services, providers, and residential settings, when
such care or support is necessary, meets an adequate level of quality,
accountability, is cost-effective, and is consistent with the individual’s
values and preferences.”
Recommendations
The Governor’s Council on Developmental
Disabilities recommends the following thirteen components toward developing
this coherent, comprehensive system, all of which are based on the past work of
advocates and providers.
1.
Enable
Active Participation
· People with developmental disabilities and their families must consult for and actively participate in any discussions on revising the system of financing, services, providers, quality assurance, long-term care, support professionals and in the discussions on managed care. They should be a part of the development discussion, not be presented with policy after the fact.
2. Embed
a Person-Centered Foundation
3. Enable Control over Resources
·
The state must
develop key aspects of consumer directed services such as mechanisms for
individuals to control the financial resources (fiscal intermediary, or
consumer control of a formal bidding mechanism) and consumer choice of
resources (state authorized vendors only, or any vendor, any source - -
including family, friends or generic community resources).
·
The
state must implement the self-determination project funded through the
Independence Plus grant it received from the Centers for Medicaid and Medicare
Services. According to CMS, promising
practices in this arena include
o developing flexible
home and community based service funding
o providing assistance
to consumers in purchasing services through support brokerage and similar
methods
o expanding the
supply of accessible housing
o creating emergency
back-up systems for personal assistance or other services
o assigning consumers
the responsibility for developing their own services and budget plan
o allowing individuals and families to hire,
train, and supervise their own personal assistant workers using a fiscal
intermediary
Surveys
across the country have found that individuals who have more control over the
services and supports they receive are more satisfied with the services and
have a better quality of life.
4. Revise the Quality Assurance,
Quality Improvement System
Develop
a comprehensive system that effectively and appropriately assesses risk and strives
to enhance safety, health, and quality of life for people in the
community. The components of this
system should include:
·
The use of
individualized service/support plans to assure that all prescribed services and
supports are delivered in a timely, effective manner, and that each
individual’s rights, freedoms, choice, responsibility and ability to bear risk
are incorporated in their plan
·
Clear channels
and procedures for individuals and families to file complaints and have their
grievances fully, promptly and respectfully considered
·
Assurance that
individual’s due process rights are protected
·
Assurance that
all providers meet the qualifications and operating standards established by
the state
·
Procedures to
make timely corrections in the system
·
A total
quality management effort throughout the system that continuously examines
leadership, strategic planning, customer and market focus, information data and
analysis, process management, and systemic outcomes.
5.
Enhance Resources to the Natural, Community-Based
Support Infrastructure
·
Develop
opportunities in each community for all types of services and supports, public
and private funding, businesses, civic and other community resources to meet
and find ways to leverage non-traditional community resources to support
individuals and families.
·
Work with
Family Connection to extend the model of family support initiated by the DD
Council and Family Connection that works within the collaborative to identify
and leverage local resources for all families.
Consider support for funding a family support facilitator in each of the
159 collaboratives.
·
Work more
extensively with school systems to integrate community resources into the
transition plans for high school students to move to the community.
·
Continue to
expand, and support at the end of the grant period, the Gateway Resource
Database that is being developed through the Aging and Disability Resource
Center grant that will eventually be accessible through the AAA’s and the
Family Connection sites, and will contain information on providers, other
services and direct support staff.
6. Develop
the provider market
Individuals
and families need more choice in the provider arena. Quality services come from a competitive market where a provider
knows that they will be out of business if they provide bad services.
·
Require
providers to undertake an ongoing total quality management initiative that
results in organizational improvements.
·
Undertake a
provider reimbursement rate study to adjust rates to incentivize best practices
and phase out less progressive services.
Develop a fiscal plan that keeps rates current with the cost of service
provision. The state should build in a
minimum cost of living increase annually, and an incentive increase that
rewards providers whose services meet the optimal standards determined in the
quality improvement effort. Providers
that earn the incentive rate increase should be recognized in literature that
informs families about the services in their areas. (Like Gateway, agency
websites and publications, annual reports, etc.)
·
Develop and
maintain the small local provider model market vs. contracting with the large
multi-region agencies that cannot seem to keep their services or staff stable.
7. Develop the support profession
One
hurdle
to expanding home and community-based services is the shortage of direct care professionals who provide
day-to-day support to people with developmental disabilities and their
families. Several factors impact the
direct support profession:
·
They are not
viewed as professionals with a valuable information base
·
They are not
compensated adequately enough to support a family on one job
·
They do not
have access to benefits, generally speaking
·
They are not
additionally compensated for advanced training; in fact the state now requires
only minimal training
·
They are not
seen as a valuable part of the management team for how services are delivered
to people with developmental disabilities although they know them the best
The solution to this crisis must be a multi-pronged approach.
· The state must recognize and support the expansion of the Direct Support Professional’s curriculum developed by the DD Council with the collaboration of the Division of MHDDAD that has completed the roll-out of two courses in 3 DTAE campuses as the official training for DSP certification.
· The state must install fair wages for the quality and quantity of the work accomplished, or consider incentives for training such as $400 for completion of the certificate program, $750 for the completion of a DTAE program, $1,500 for an Associate Degree, and $2,000 for a BA, BS, etc….
· The state should recognize providers whose staff has been trained in the certificate program.
· The state should consider allowing DSP’s into the state health plan after a certain level of tenure has been attained
These steps will encourage the development of a stable, professional, quality workforce and direct care professionals feeling that they are valued by both their employers and by individuals receiving support.
8. Commit
to a multi-year funding plan
There
are currently over 5,000 people living in the community who are on the waiting
list for home and community-based services.
HR 1307 required the Department of Human Resources and Department of
Community Health to submit a multi-year funding plan to address the waiting
list. The Multi-Year Funding Plan accounts for
·
Annually
increasing the number of individuals living in the community who will receive
supports through the Medicaid Waiver program;
·
A
provider rate increase of 4%
·
Annually
increasing the number of individuals transitioning from institutions to the
community with the necessary supports.
Additional revenue for Medicaid match will be required to implement the
Plan.
9. Adjust
waiver services and waiver rates to incentivize best practice
·
The
Department needs to change policy and create incentives for people to have real
jobs. Employment opportunities can be
provided through supported employment or through initiatives such as customized
employment currently being implemented through the Jobs for All and Cobb
Works. Both projects have received
strong support and commendation from the U.S. Department of Labor, Office of
Disability Policy.
·
The
Division should add Peer Support as a Medicaid billable service. Continue to develop and improve the Peer
Support Training that was funded through the Real Choices Systems Change
Grant. Peer support will be especially
important for individuals who move from nursing homes and institutions into the
community.
·
Include
behavioral supports as a billable service in the MRWP waiver. In order for individuals with behavioral
challenges to be served successfully and safely, providers must be reimbursed
for work on a behavioral support plan that will prevent individuals from going
into crisis and ending up in the ER, or back in the institution.
·
The
State should consider establishing a risk pool fund that can be used to address
unexpected or emergency cost overruns for individuals in the system. The State should be allowed to carry over
any unused funds.
10.
Consider
new models
·
Explore using
the SOURCE model of Enhanced Primary Care Case Management as way to better
coordinate and assure quality of services that people receive, and to provide
some interim services to individuals with developmental disabilities on the
waiting list. Current SOURCE case
managers assist individuals to gain access to the support and services. Plan reviews and utilization review take place to
determine the appropriateness and adequacy of the services and to ensure that
the services furnished meet the needs and choices of the person. In
addition, case managers are authorized through utilization review to approve substantial
increases in services in a timely manner.
·
Invest in creating learning opportunities from service
providers who provide quality services and supports, through mentoring,
interning, site visitation, or other methods.
·
Begin each person’s entry to service with person-centered
planning and individual budgeting.
·
Support the presence of fiscal agency providers with adequate
reimbursement rate structures.
·
Adequately train and reimburse support brokers. Support coordinators, which are currently in
the system, cannot move to support brokerage practices without extensive
training. The Real Choice Grant
contains money for training.
·
Leave the Regional Offices as the place where eligibility
determination, complaint
investigation and
allocation of funding occur. From
there, the planning and coordination of services should occur through the
support brokers who live and work in local communities, have the local contacts
and can network on the individual’s behalf.
·
Develop and maintain system transparency so people can find out
how things work, who to call, and who is responsible.
11.
Move money
No changes in
state law are required to implement this plan; however, the long term care and
supports system could be improved if funding were more flexible and followed a
person to a preferred setting.
Sometimes, individual choice is limited because department budgets are
fixed and inflexible.
There are
barriers, however, to achieving the full intent of the “money follows the
person” concept.
·
Money does not
follow from the nursing home budget to the community services budget.
·
Individuals do
not have the option to “pool” all of their community services dollars from
various state agencies and spend it all on the service of their choice.
The possible
solutions to this barrier have been tried in other states, such as Texas and
Michigan.
·
Create linkages
between budget categories so that as a person moves from one service/setting to
another, the money actually moves from one budget to another.
·
Combine
funding from different Medicaid services into one flexible funding source that
people can access regardless of which setting/service they choose.
·
Conduct a
comprehensive review of all regulations that impact services to people with
developmental disabilities with the idea of eliminating the many regulatory
barriers that exist to allowing people to have more control over their own
lives.
12. Foster Interagency Collaboration
Effective services
for people with developmental disabilities cannot take place in a system of silos. Multi-agency teams must work on the systemic issues together. Multi-agency collaboration is particularly
important when transition individuals from institutions to the community, and
from high school to work and adult life in the community.
13. Fund and
Implement the Children’s Initiative
HB 633 urges the
DHR, DCH, DOE, DOL and DJJ to identify, assess and plan comprehensive services
to move children under the age of 22 from nursing homes, institutions, private
ICF-MRs and hospitals to the community. To be carried out successfully, the state
needs to apply many of the recommendations in this paper to the children’s
population—conduct person centered planning, develop provider capacity, enhance
quality improvement, foster interagency collaboration, encourage full
participation, etc. In addition, the
DHR needs to create and send to the Governor a budget package that is dedicated
to the children’s movement and does not compete with the needs of the adult
population.