IDDD Task Force Comments

Family Voices Indiana is the Family-to-Family Health Information Center for the state.
We assist
with system navigation for families raising children with special health care needs and/or
disabilities, ages 0-21. We are pleased with many DDRS services, but there is always room for
improvement. We appreciate this opportunity to provide comments on the development of a
statewide plan for the individuals we serve.
Early Intervention
I. First Steps
● First Steps is a valuable program for children to receive early intervention
services. While we are aware of coordinated efforts to increase screening
services for children in Indiana, many families still report that their child’s doctor
is reluctant to make a diagnosis and prefers a wait-and-see approach. Therefore,
it’s critical that First Steps performs child find and outreach activities to raise
awareness of families’ ability to self-refer to the program without the need for a
formal diagnosis. We realize that they still must meet eligibility requirements, but
many families don’t realize they don’t need a formal diagnosis to access early
intervention.
● Families in First Steps seem to lack adequate knowledge of available services.
We get requests from many families in First Steps, for example, who are seeking
assistive technology. Development advances when children have opportunities to
practice newly acquired skills as well as when they experience a challenge just
beyond the level of present mastery. For some children, that practice requires the
use of assistive technology. Service Coordinators must have knowledge of and
share information about all available services for children in First Steps.
II. Access to Providers

● In some parts of the state, families struggle to find providers. A solution is an
expansion of telehealth services for those areas, as appropriate. If local providers
are not available, part of the state’s responsibility is to provide network adequacy.
Families could also use assistance determining if other services are available, as
indicated in this ELAC document:
http://www.elacindiana.org/elacindiana/wp-content/uploads/2016/01/Indiana-Infan
t-Toddler_PolicyBrief-1.pdf
III. Medicaid Coverage

● Many families now receive home- and community-based services while in First
Steps. This program also includes Medicaid coverage, yet there is confusion
around cost participation policies as they relate to services covered by Medicaid.
Many families who have Medicaid are still billed for services, even if they are a
Medicaid-covered service. In general, Medicaid providers can’t bill families for
services covered by Medicaid, even if the reimbursement rate isn’t adequate.
Policies surrounding cost participation based on family income, even if the family
has Medicaid, should be clearly outlined so families can understand them.
Assessing current communication materials for literacy levels and readability will
help families understand Medicaid policies and allow them to make more
informed decisions about their child’s care.
Special Education
I. Navigation
● Eligible children with disabilities are in the school system from ages 3-22. This is
a critical time for development and growth, yet many families are not adequately
equipped to navigate this complex system. While procedural safeguards are
provided to every family, the legalities of special education are too complex for
many to confidently navigate. In some cases, families are told that a school’s
policies, programs and procedures don’t include mandated services and
supports, and parents aren’t aware of the school’s legal obligations to provide
individualized FAPE. Additional parent training as a component of IEPs will
provide tools for families to be better partners in their child’s education.
● These challenges are more acute for families in underserved communities who
often struggle to access adequate services, especially nursing. Many
communities have less community preschool placement options for ages 3-5
years simply due to area demographics. This report from IIDC indicates that
there is room for growth in the availability of inclusive placements:
https://www.iidc.indiana.edu/styles/iidc/defiles/ECC/Preschool%20Inclusion%20R
eport_Final.pdf
II. Transition
● We receive many calls from families whose children are getting ready to exit
school services, and a large percentage of them are not adequately prepared for
the transition to adulthood. While we realize that transition planning is part of an
IEP, current practices aren’t comprehensive enough to prepare the student for
the first day after school ends. The school is responsible for working with the
parents and student to write an IEP that demonstrates what the school will do in
that IEP period to assist the student in working towards his/her chosen career
path and/or goals. Better transition IEP plans will lead to better outcomes and
more independence and self- determination.
Vocational Rehab
I. Access
● Many families struggle to understand and access VR services. Clear explanation
of VR’s capabilities and programs is critical if the task force plans to emphasize
employment.
● There is a great deal of misunderstanding regarding SSI and work. Many families
do not support work for their child due to a lack of understanding of work
incentives and other benefit options. More technical assistance, training around
benefits information and in-person assistance navigating this system will clear up
misunderstanding and answer questions. Promoting existing resources such as
https://www.iidc.indiana.edu/pages/fact-sheets-on-work-incentives is a first step
toward better understanding among families.
● While Family Voices supports a continuum of options, we also support integrated
settings. Organizationally, we do not support the use of home- and
community-based funding to support segregated sheltered work. Similarly, we do
not support the use of home- and community-based funding for segregated
housing.
HCBS/ Waivers
I. Life Course Implementation

● Family Voices supports person-centered planning and family-centered care and
appreciates the division’s emphasis on Life Course. We feel, however, that
families and case managers will need additional support to effectively implement
the framework, and hope there will be accountability for case managers to
implement Life Course as the division has envisioned.
● Families sometimes report that while many case managers are great, they also
lack adequate knowledge of the system beyond HCBS. Since these families also
have Medicaid, OMPP has indicated that case managers are tasked with
assisting with that component as well. For case managers who do not
understand Medicaid, especially EPSDT provisions for children 0-21, the state
has an affirmative obligation to educate them to ensure that Medicaid-eligible
children and their families are aware of EPSDT and have access to required
screenings and necessary treatment services.
II. Waiver Process

● We find that families are often caught in a siloed system as they navigate the
Medicaid waiver process. Family Voices, therefore, strongly suggests that FSSA
better coordinate DFR and BDDS processes. Step-by-step written directions and
an FAQ for common barriers would ease the process, and more clearly
understandable written material in general would allow families to present
accurate state policy if they encounter misinformation.
III. Staffing
● Many families who have HCBS struggle to find staffing. In part, this is due to a
system designed more for adults than children. Children need services that build
on their growing development. They also need services that complement those
received at school and at times school is not in session. There is a need for more
flexible providers who are willing to meet the unique needs of this population.
● In addition to an inadequate network of providers and staff, many families
struggle with staffing due to behavioral issues. This points to a need for additional
training and greater interventions for communication and behavior challenges so
that adequate staffing can be acquired. Currently there is a danger that those
with the greatest challenges and needs go unstaffed. Unfortunately, these
families are most likely to end up in crisis.
● Under the current system, providers are not mandated to accept individuals into
services. As a result, many families are reluctant to report provider issues. Family
Voices supports a process in which families and individuals can anonymously
report provider issues with BQIS so they can be adequately investigated.
● Families and individuals should know the employment history of a direct support
professional. The DD population is especially vulnerable and currently direct staff
who are fired for a potential felony incident with another provider can simply be
hired by a new agency. Thus, we feel it’s important to create a registry of direct
support professionals.
IV. Crisis Services

● Family Voices firmly believes DDRS needs to reinstate crisis services. Under the
previous crisis plan, Crisis Assistance Services provided specific supports in a
timely and intensive manner for individuals with developmental disabilities
experiencing extreme behavioral or psychiatric issues in which their health and
welfare or the health and welfare of others is in serious jeopardy. These services
are desperately needed by some families and individuals.
● Crisis Assistance Services included: • 24/7/365 Telephone Crisis Support •
In-Home Technical Assistance • Out-of-Home Short Term Residential •
Follow-Along Post Crisis Intervention
General
I. Cultural and Linguistic Competency

● Family Voices has served Hispanic families, and others, since our founding in
2011. In general, these families struggle more with all aspects of the DD system.
They often come to the U.S. from countries that do not have equivalent services,
lack knowledge of what’s available to them and have increased difficulty
navigating the system due to language and cultural differences. We recommend
that FSSA prioritize systemically embedding cultural and linguistic competency in
order to offer these children and families the additional supports needed to
achieve the best possible outcomes.
Thank you for this opportunity to better serve families and individuals in Indiana.
www.fvindiana.org
844 F2F INFO
[email protected]

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Family Voices Indiana is the Family-to-Family Health Information Center for the state.

II. Access to Providers

III. Medicaid Coverage

I. Life Course Implementation

II. Waiver Process

IV. Crisis Services

I. Cultural and Linguistic Competency

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