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COMMENTS
ON
THE
DRAFT
RENEWAL
OF
ILLINOIS’
HCBS WAIVER
FOR The Institute on Public Policy for People with Intellectual and Developmental Disabilities The pending renewal of the HCBS waiver provides Illinois with the opportunity to critically evaluate the structure, design and components of the service delivery system for adults with Intellectual and Developmental Disabilities (I/DD). The present service delivery system in Illinois is inadequately nearly any objective measure: the number of persons receiving HCBS funded services; the range of options available to those who do receive HCBS funding; realistic reimbursement rates to assure quality service delivery; prioritization of best practice models of service; opportunity for customization of those programs that are include in the waiver to meet unique needs and circumstances of people with I/DD.
Historically, Illinois has not taken
advantage of the unique opportunity the waiver renewal
provides to critically assess our current status and correct
system issues that prevent Illinois residents with I/DD from
receiving innovative services like those available in other
states.
Since 1989, only minor edits
have been added, mostly for purposes of federal compliance,
but have not included progressive public policy changes.
Multiple forums, committees,
and task forces have been hosted over the past 6 years by
DHS staff to receive input to substantially improve the
language in the waiver to offer individualized support
options.
These recommendations must be
integrated into the upcoming waiver reauthorization. An All or Nothing Model: The Illinois Medicaid plan favors large congregate care settings for adults with I/DD in nearly every facet. Illinois has the 3rd largest number of individuals residing in state institutions, behind Texas and New Jersey. Illinois has more large private ICFDD facilities in the state Medicaid Plan than most other states. Illinois has the largest percentage of individuals receiving community services residing in settings of 7-15 people; 31% compared with a national average of 10% and 3% for all of the small New England states (Braddock, State of the States, 2010).
This
waiver
is a
“facility
based”
model
built
upon
24
hour
supervised
group
home
living
(unless the
person
can succeed with living with
15
hours
per
week
of
Intermittent
CILA supports)
and
a
maximum
of 1,100
hours of
day
programs.
The waiver continues to favor 8
person group homes with a rate methodology that does not
cover the minimal provision of individualized supports,
especially for adults with complex medical and behavioral
challenges.
Rate Methodology. The ICAP has been used for eligibility determination and for the purposes of “rate setting” even though it was not designed for the latter. The rate methodology also has not changed materially since the first waiver was approved almost two decades ago in 1989.The rate methodology must be adjusted to focus on the costs of direct labor, clinical supports, medical supports, transportation and other critical costs necessary to provide quality supports.
Such
rates
should include
geographical
differentials
and
be
based
upon
existing
DOL
labor
and
fringe
costs,
HUD
housing
costs
and
local
transportation
costs.
Major
work
was
begun
on
this
project
several years
ago
and
the
committee
work
should
be
reviewed, updated, and implemented.
Furthermore, the monthly
service cost maximums for home based supports should be
eliminated in favor of an annual cost maximum.
The service facilitator and
ISSA staff should work with the individual and his/her
family to manage the annual allocation.
The home-based program also
should be individualized based upon level of supports needed
rather than one amount for everyone. Employment: The waiver promotes the provision of “employment” services through large-scale congregate developmental training (DT) programs with a modest flat rate of $12,000 a year if you live in an ICFDD or $10,000 a year if you live in your own home or in a CILA. A flat rate of $10,000 regardless of level of need, which also includes the cost for door-to-door transportation, is antiquated and insufficient to meet individual support needs. This translates into roughly $7.69 an hour for developmental training. To put this in perspective, the state-funded day care rate is currently $14,000 a year and this does not include door-to-door transportation. The waiver should adopt an Employment First policy and provide incentives for individuals to become employed through the array of employment options: competitive; supported; customized; and, individualized on-site Job supports. Individualized Supports: The Illinois Home-Based Supports component of the waiver allows for individualized supports (such as a life coach, job coach, community access coach, budget coach and exercise coach), as well as budget authority to direct some or all of their supports (within established cost limits).
This provision should be incorporated
throughout the entire Waiver application to allow for
innovation in meeting the support needs of individuals.
The
waiver
must
focus
upon
the
individual
and
the
broad
array of
necessary
supports
to increase
the
person’s
independence,
productivity,
integration,
interdependence,
and
inclusion.
DSP wages: As the state struggles to close state operated residential facilities and to implement the Ligas consent decree, it is imperative that Illinois design a waiver that allows people with disabilities the dignity of choice and the provision of supports to meet their needs. This care must be provided in an environment in which direct support professionals (DSP) (since you use the acronym later, it should be consistent here) are paid a decent and livable wage.
Under the current waiver, DSPs working
in the Home-Based Supports program can be paid up to $20 an
hour without a special review (as this rate has been indexed
to annual increases in social security) However, DSPs
working in a CILA or DT program, earn much less
--
a rate that has not been increased in years.
Assessments: To provide truly individualized services and supports, the system must have a better tool than the ICAP to determine level of supports needed. The tool being used to do this in a number of states is the Supports Intensity Scale (SIS). Supplementary scales such as “Assessing Persons with Complex Disabilities – The KMG Fragility Scale” can be used for individuals with complex medical/health care needs. In view of the aging of the population of individuals with DD, the State also should consider using the Health Risk Screening Tool, which can be administered by trained DSP’s.
This
tool is
web-based
and
available
for
a
nominal
cost
per
person
per
month.
These
assessments or others like them should be used to assess
individuals with complex behavioral or medical needs,
provide a rate based upon individual needs, and allow
multiple year rates.
We also suggest eliminating the
90-day review process for the add-on for individual support
needs, and make that an annual reassessment.
Temporary Assistance.
We recognize that temporary assistance
is necessary to avoid institutionalization for individuals
with I/DD in crisis.
However, we strongly suggest
the cap of 60 consecutive days be amended, or provisions be
included so that this 60 day maximum can be waived by in
cases where disruption of the temporary assistance would
result in institutionalization of the individual.
The
waiver needs to enhance the capacity of the current crisis
and emergency support system to be more effective and
responsive.
Transportation.
Again, the waiver should allow
non-medical transportation costs to be billed through the
waiver for door-to-door transport to developmental training,
as an allowable cost, rather than as part of the $10,000 a
year total allowable reimbursement.
In Arizona their day program
allows 1796 hours annually for developmental training and
another 510 hours for transportation to and from home to the
program.
Number of Participants.
It is not clear why the waiver
renewal stipulates that Illinois will have 17,300 waiver
participants in Years 1-5.
With the implementation of
Ligas, movement of individuals from Jacksonville
Developmental Center, and providing supports to people from
the community, why would this number be the same for each
year?
MFP.
In
a
national evaluation of the Money Follows the Person
Demonstration Programs (Mathematica, October 2011), it was
stressed that one of the top success indicators of the MFP
was the extra HCBS funding beyond what Medicaid programs
typically cover.
This supplement, it was found,
made the difference in success rates for individuals.
The Illinois waiver should
allow for extra HCBS service funding as people transition
from state facilities, nursing homes, and under the
Ligas
implementation plan.
MFP also requires 4 or fewer
people to live in one unit of housing.
In Illinois, this will require
changes to the waiver rates.
The 75% match should motivate
the state to seek new models of support, like an individual
support option.
Choice.
Just as individuals have a choice of
CILA provider, DT provider, supported employment provider,
and HBS provider, to name a few, individuals should have a
choice of ISSA provider.
Residential Habilitation.
There is no funding in the waiver for
building maintenance.
While we understand the cost of
typical maintenance cannot be covered under the waiver, we
are adamant the waiver should allow for repair of property
destroyed as the direct result of complex behavioral
challenges.
If providers are responsible
for bearing the entire cost of these repairs, fewer
providers will be willing, or financially able, to support
individuals with complex behavioral issues.
Also in this section, it states that
nursing supports like provided in an ICFDD are not allowable
in the waiver.
Yet in Illinois one cannot be
discharged from CILA who needs ICFDD level of nursing care.
Assistive Technology.
The national waiver guidelines talk
about effective and cost effective technology.
The Illinois waiver should
better include cost effective assistive technology.
CMS allows the purchase of
tablets, cell phones, and GPS systems under certain
circumstances. CMS has a framework for making
decisions about various items that fall outside of the
traditional ideas about what Medicaid can buy—and has been
used to justify buying things like a washing machine—which
is cheaper than staff support and transportation to the
Laundromat over many years….
We must think in
non-traditional ways about how assistive technologies can be
best utilized to support individuals in their homes and
communities while avoiding institutionalization.
Individual Directed Goods and Services: The waiver should be
amended to include individual directed goods and services.
Many of the states that include this service in their waiver
provide it at an average annual cost of less than $1,000 per
user. This is an example of a service that can be
individualized to the person with a disability, while saving
the state money by decreasing the use of alternative
Medicaid services. The core service definition provided by
CMS is pasted below.
Monitoring.
The
waiver
should
allow
for
the
appropriate
use
of and
payment
for
remote
sensors
and
remote
monitoring
technology
and
systems
to
further
increase
the
individual’s
control
(with
individual
consent
and
rights’
protections)
of their
housing
environment
and
reduce
the
need
for
DSP
on-site
resources.
Indiana, Ohio, Louisiana,
Wisconsin, and West Virginia have begun offering this
service through their HCBS Waivers and can be used as
templates for Illinois.
Licensure and Regulations.
The
State
should review
all
of its
current
licensing
standards
and
regulations
to
be
sure
that
they
are
consistent
with
valued
outcome
measurement,
while offering
the
necessary
protections
of
health
and
life
safety.
Regulations should not be
intrusive,
nor involve a
micromanaging
process;
rather, they should promote quality outcomes.
For
example,
a
regulation
for
person-centered
planning
should
include
the
5-8 key
characteristics
of
a
person-centered
plan
rather
than
15-20
prescriptive
pages
of
details
on
how to
conduct
a
person-centered
planning
process.
The
regulations
should
focus
on
the
“what”
and
not
the
“how”.
The
how
should
be
left
to
the
creativity
of the
person/family
and/or
provider(s)
of supports
and
services.
There are many corresponding issues with the Standards and
Licensure Requirements for Community-Integrated Living
Arrangements (CILA) that demand review in conjunction with
the HCBS Waiver review.
Medical Services.
The CILA rate
methodology discriminates against individuals with complex
medical needs.
If you live in a children’s
group home, your nursing needs are reimbursed. However, once
you become an adult, the rate drops dramatically for the
same individual.
Current funding under CILA does
not allow medical staff to be on call on a 24 hour basis,
[Illinois Administrative Code115.240 (k)], yet it is
required.
The 6-month medication review
is unfunded.
A person is only funded for one
wellness visit per year.
To satisfy this requirement
[Administrative Code 115.240 (e)], staff must “create” an
excuse for an additional doctor visit.
Nurse delegation prohibitions
should not be a barrier to residing in the community.
Colorado, Iowa, Missouri,
Nebraska, and Oregon allow 16 health maintenance tasks to be
delegated, yet Illinois permits fewer than 4 tasks to be
delegated, thereby increasing cost of care.
Termination of Services.
Please review closely Administrative
Code 115.215 (a), criteria for termination of services.
The language as written does
not reflect practice.
Interdisciplinary Process.
The Institute supports the use of an
interdisciplinary team in the development of a plan for each
individual.
The Administrative Code
references this in section 115.230.
However, discipline trained
staff are not funded under the CILA program.
In the current political and economic climate, the Waiver must address policy needs of equity, efficiency and accountability for measurable results. Moreover, the State must take into account the Olmstead Supreme Court decision and the U.S. Department of Justice’s policy paper on segregation and integration published on June 20, 2011.
In
order
for
the
State
to
more
equitably
allocate
resources,
ensure
accountability
for
valued
outcomes
and
meet
the
needs
of its
citizens
with
developmental
disabilities,
the
current
waiver
needs
a
prodigious
amount of re-
writing.
Alternatively,
a
completely
new
Individual
Supports
HCBS Waiver should
be
developed
and
submitted
to
CMS
for
approval.
What we are proposing it not unrealistic or overly burdensome. We can learn lessons from other states that have already implemented innovative and person-centered waivers. Illinois has an opportunity to promote progressive public policy through the rewrite of this waiver. We should take this opportunity to incorporate progressive individual support options into the waiver as other states have done. These "support waivers" often rely on natural supports, and are able to support individuals in their own homes or their family homes for an average cost of $7,500 - $19,000 per year – much less than supporting individuals in 24 hour residential programs if this level of support isn't necessary. These other waivers are a matter of public record, and can be used as templates for Illinois. We suggest Illinois review the waivers of states like Oregon (OR.0375), Washington (WA.0408), Virginia (VA0430 and VA0358), Wisconsin (WI484), Georgia (GA0175), and Pennsylvania (PA0354), then cut existing language from those waivers, and paste in into the Illinois application.
There is minimal risk as CMS has
already approved the language and the implementation.
We must quit presenting
individuals with I/DD and their families with an all or
nothing option.
We must tailor supports to meet
the needs of individuals, not force individuals into the
structure of our existing system.
In conclusion, it is best to use the
words of the individuals these policies most directly
impact.
In March of 2011 a group of
self-advocates came together to define the meaning of
community living.
In summary, they want:
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