Early Intervention
The Early Intervention (EI) program serves children ages 0–3 years who have
or are at risk for developmental delays. While providers frequently think of EI
as a payer of physical, occupational, and speech therapies, the program also
provides social work, care coordination services, psychological services,
audiology and vision services, and transportation reimbursement. One-time
medical evaluations for the purpose of diagnosis may be covered, as well as
other health services, such as nursing checks or nutritionist visits. An
important benefit from EI is coverage for assistive technology devices and
services, such as positioning chairs, standers, augmentative communicators, and
similar devices that are often very expensive and variably covered by
insurance.
Families with any income level should apply for EI, but families with higher
income levels pay a co-payment on a sliding scale. Families should apply even if
their insurance covers some EI services, since enrollment often allows their
children to receive therapy visits beyond insurance maximums or acquire types of
equipment not uniformly covered by insurance.
Application process for EI program:
Providers may refer patients to EI or families may apply independently. The
program is administered by local Child and Family Connections offices. To find a
local office phone number, call 1.800.323.4769.
Families will be screened for eligibility and then assessed to develop a
detailed Individual Family Service Plan (IFSP) that determines the service needs
for each patient. Family and provider advocacy is often critical in securing
needed services though the IFSP process. For more information, visit: http://www.dhs.state.il.us/ei/.
DSCC Core program
Each state has a program for children with special health care needs that is
funded by a combination of federal funds from Title V of the Maternal and Child
Health Block grant and state funds. In Illinois, this program is administered by
the University of Illinois at Chicago (UIC) Division of Specialized Care for
Children (DSCC), and serves the entire state with a network of 13 regional
offices.
In order to be eligible for the DSCC Core program, children must be under 21
years of age and medically eligible. In order to be considered medically
eligible, conditions must be chronic, amenable to treatment, require long-term
specialized treatment and conform to the following categories of impairment:
orthopedic, nervous system, cardiovascular, hearing, speech, eye, urinary
system, certain congenital anomalies (eg, cleft lip/palate), inborn errors of
metabolism, cystic fibrosis, or hemophilia.
Regardless of family income, children are eligible for a diagnostic
evaluation when there is a suspicion that the child may have a DSCC Core program
eligible condition. All families who meet medical eligibility criteria are
assigned a care coordinator who can help the family find information and
services and communicate with providers and payers.
If families meet certain financial criteria – income below 285% of the
Federal Poverty Level – they are eligible for additional assistance. Financially
eligible children may receive coverage for equipment (eg, hearing aids,
wheelchairs), therapies, and medical/surgical services that are related to the
eligible condition and not covered by the family's insurance.
Primary care providers are encouraged to refer to DSCC children with
potentially eligible medical conditions, so families can take advantage of care
coordination services. Another important reason to refer children to DSCC is
that the program can reimburse for certain CPT codes that are not typically
covered by insurance, if the family is financially eligible and the provider is
a DSCC enrolled medical home provider. Providers can receive reimbursement for
telephone calls (CPT codes 99371-99373), care plan oversight (CPT codes
99339-99340), prolonged services that do not require direct patient contact (CPT
codes 99358-99359), and team conference codes (CPT codes 99361-99362), as well
as some other office-based services. Use of this reimbursement can help overcome
some of the time and financial barriers to providing effective medical homes for
eligible children. To become enrolled as a DSCC medical home provider, call
800.322.3722.
Application process for DSCC Core:
Families need to submit an application to their regional DSCC office. To
locate a regional office or get general information, call 800.322.3722 or visit
the DSCC Web site: http://www.uic.edu/hsc/dscc . The Web site also has
application forms, resources, and information for providers who wish to enroll
as a DSCC provider.
Supplemental Security Income (SSI)
The federal Social Security program provides monthly cash benefits for
children who meet disability and financial criteria. Families can get up to $623
(annually increased) per month that is to be used for the cost of food, shelter,
and clothing for the child.
In order to prove disability, a child must have a medical impairment that
results in severe functional limitations compared to typical similarly aged
children. This impairment must have lasted or is likely to last for 12 months or
result in death within that timeframe. A list of eligible conditions and
criteria can be found at http://www.ssa.gov/disability/professionals/bluebook/ChildhoodListings.htm
.
The process to determine disability can take several months. However,
children with certain conditions are presumed eligible and Social Security will
pay benefits during the formal disability determination process. These
conditions include children with HIV infection, total blindness, total deafness,
cerebral palsy, trisomy 21, muscular dystrophy, severe mental retardation (child
age 7 years or older), and extremely low birth weight.
Financially, families must meet income and asset tests of eligibility. The
income limit takes into account family size, parents in the home, number of
other children, and source of family income. To give a general idea of
eligibility, in 2006 a 2-parent family with 1 child with a disability and 1
other child could earn up to $3440 in gross earned income per month in order to
be financially eligible. The asset test looks at family assets, excluding
standard necessities like a home and 1 car, with the remaining countable family
assets required to be less than $3000 for a child living with 2 parents and
$2000 for a child living with 1 parent.
Application process for SSI:
To apply for SSI benefits, families must contact their local Social Security
office or call 800.772.1213. Families will need to provide detailed financial
and medical information and providers will need to fill out necessary forms.
Most children are denied benefits on initial application, but are successful on
appeal. More detailed information may be found at: http://www.ssa.gov/pubs/10026.html and http://www.hdadvocates.org/ProgramsChildren/NewHelpForParents/SSI/main.htm
.
Home nursing services
Home private duty nursing for medically fragile and technology dependent
children is expensive and infrequently covered fully by private insurance. Thus,
all states have programs that provide children with home nursing care to allow
them to be treated at home rather than at a congregate care facility, such as a
nursing home or hospital. In Illinois, the DSCC Home Care Waiver and the
Healthcare and Family Services Nursing and Personal Care Services (NPCS)
programs both fund nursing care with Medicaid funds. However, there are
important differences between these programs, namely that NPCS only serves
Medicaid-enrolled children while the Home Care Waiver program serves all
medically qualifying children regardless of insurance coverage or income.
DSCC Home Care Waiver program
The DSCC Home Care Waiver program is one of several Illinois home and
community based services waiver programs, meaning that the state has obtained
permission from the federal government to waive the usual eligibility
requirements for Medicaid and provide specialized services to certain patient
populations. In the case of the Home Care Waiver program, this means that
families of any income may be eligible, although they must use whatever
insurance benefits are available for the child.
The Home Care Waiver program only serves medically fragile and technology
dependent children who require home nursing care to avoid long term
hospitalization or nursing home placement. In addition to home nursing services
provided though a licensed home health agency, the Home Care Waiver program
provides families with a care coordinator, additional hours of nursing for
respite care, home modification for accessibility, and medically necessary
equipment and supplies. All children also get Medicaid coverage, including
secondary Medicaid for insured children, which may assist with out-of-pocket
family costs.
The Home Care Waiver program historically serves children with tracheostomies
and/or home ventilation. There are, however, children without tracheostomies in
the program, particularly children who are dependent on total parenteral
nutrition or physiologically unstable. Furthermore, all children with
tracheostomies need not be enrolled in the waiver program if their total medical
needs are relatively low. The key variable is whether the child is at high risk
for hospitalization or nursing home placement without home nursing services, not
the exact technologies involved. The family must be willing and able to care for
the child at home and the cost of home care cannot exceed that of
hospitalization or institutionalization.
NPCS program
For children already enrolled in Medicaid, the NPCS program provides nursing
care through the Early and Periodic Screening, Diagnosis, and Treatment program
of Medicaid, a federal mandate that requires state Medicaid programs to cover
certain medically necessary services for eligible children younger than 21 years
of age, even if those services are not covered by the state's adult Medicaid
program. Thus, any Medicaid-enrolled child who requires home nursing, including
those from families with higher incomes in the Illinois All Kids program, can
apply for NPCS. Insured families not enrolled in a Medicaid program cannot
apply; they must qualify for the DSCC Home Care Waiver program in order to get
Medicaid-funded home nursing.
Enrollees in NPCS generally have a lower level of medical fragility and
technology dependence than children in the DSCC Home Care Waiver program. For
example, a child dependent on continuous enteral nutrition may be able to obtain
services through NPCS, but would be unlikely to receive services in the DSCC
Home Care Waiver program. Unlike the Home Care Waiver program, families do not
receive care coordinators, respite, or home modification. However, because the
NPCS program is not a waiver program, enrolled children may be eligible to
receive non-nursing services from another waiver program, such as the Home
Services Waiver or the Children's Support Waiver (described below), while also
receiving NPCS home nursing services. As children can only be enrolled in 1
waiver program, children in the DSCC Home Care Waiver program cannot receive
services from these other waiver programs. Physicians or program case managers
can help families to explore the programs and services that best meet their
children's needs.
Application process for Home Care Waiver and NPCS programs:
To apply for the DSCC Home Care Waiver program, families need to submit an
application to their regional DSCC office. To locate a regional office or get
general information, call 800.322.3272 or visit the DSCC Web site: http://www.uic.edu/hsc/dscc.
Currently, physicians need to write a comprehensive letter of medical
necessity in a standardized form, although this will change in the near future.
The DSCC office will help families compile all necessary application materials,
which are then sent to Medicaid for approval, and help the family find a nursing
agency.
For the NPCS program, the contact phone number is 217.524.7340. This number
is for providers and nursing agencies only. A letter of medical necessity must
be faxed to Illinois HFS, Division of Home Care, fax: 217.524.0099, attn. Shari
Bangert.
For both programs, a physician letter of medical necessity is a key
determinant in whether a child is able to get nursing services and allocation of
weekly hours. A detailed, compelling letter that describes both the medical and
social reasons why home nursing care is necessary to avoid hospitalization or
nursing care placement is necessary. Providers need to request a specific number
of hours in their letter, and give information about prognosis and how long the
child is likely to need services. In addition to considering physician requests,
DSCC and Illinois Health and Family Services are currently piloting an
assessment tool to aid in the determination of needed hours based on specific
criteria that may be implemented in the near future. Reviewers in both programs
tend to favorably view requests for nursing care that allow family members to
work, and such information should be included in letters of medical
necessity.
It is important to counsel families that eligibility for nursing services in
either program does not guarantee full staffing of cases. There is a shortage of
home care nurses and thus many cases are not fully staffed. Given the shortage
of home care nurses, providers should be especially judicious in referral of
patients with lower levels of fragility and technology dependence, since there
are other programs that may be able serve these children more effectively.
DRS programs for home care
While the emphasis of the DSCC Home Care Waiver and the NPCS programs is on
medically fragile and technology dependent children, there are a number of other
state home care programs that are more geared to a specific condition or
disability. These programs should be considered for certain patients who may not
qualify for DSCC Home Care Waiver or NPCS benefits.
The Illinois Department of Human Services, Division of Rehabilitation
Services (DRS) offers 3 home and community based waiver programs that serve both
children and adults. The largest waiver program is the Home Services Program,
which serves individuals with primarily physical disabilities. There are also
specific waiver programs for individuals with brain injury and HIV/AIDS.
These programs can provide enrollees with care coordinators, personal
assistant services, homemaker services, home health nursing, assistive
equipment, home modification, and respite services. The Brain Injury program
also may provide some additional habilitative and vocational services.
In order for a child to be eligible for DRS programs, the child must have a
disability that is expected to last at least 12 months and have a mental and
physical functioning score of at least 29 on the Determination of Need
assessment tool administered at local DRS offices. This score is used to
determine a service cost maximum dollar amount that can be applied to the cost
of eligible services.
The family must have less than $35,000 in family assets, excluding home, car,
retirement funds, and personal property. While children must qualify for the
lowest income level of Medicaid (level 1) to be eligible for waiver enrollment,
the program does take enrollees with higher income levels as long as they meet
the asset test. These enrollees are funded only by state dollars and so are not
technically in a "waiver," but to the family there is no distinction
programmatically.
Application process for DRS programs:
Families must call 800.843.6154 to find their local Office of Rehabilitative
Services to request services. A home services counselor then comes to the home
to assess eligibility. For more information visit: http://www.dhs.state.il.us/ors.
Services for children with developmental disabilities
The Illinois Department of Human Services, Division of
Developmental Disabilities (DDD) administers a number of services and programs to
both children and adults with developmental disabilities. The State of
Illinois defines children as developmentally disabled if they are
cognitivelyimpaired(IQ<70) or a have a related condition that causes a lifelong
disability with substantial activity limitations, such as autism, cerebral
palsy, epilepsy, and other similar conditions. Psychiatric illness is
excluded.
Unlike DRS programs, DDD programs and services are not entitlements and
enrollment is dependent on budgetary availability. Thus, the State maintains a
database known as the Prioritization of Urgency of Need for Services (PUNS).
This instrument assesses family needs for various services such as respite,
therapies, home/vehicle modification, transportation, and financial assistance,
and classifies them as Emergency (needed immediately), Critical (needed within 1
year), or Planning (needed in 1–5 years). It is important that pediatricians
direct all families of children with developmental disabilities to complete the
PUNS form regardless of current need so the State may track their unmet needs
and allocate resources appropriately in the future.
For children with developmental disabilities who are most at-risk for
out-of-home placement due to high care needs, the State of Illinois has started
a Children's Support Waiver as of July 1, 2007. There are no current income or
resource restrictions on enrollment, though it is likely that there will be some
parent fees in the future. Covered services may include case management, home
modification, adaptive equipment and technology. One service provided by this
program that is excluded in DRS programs is behavioral modification and
treatment, a benefit of particular need to children with autism and related
disorders. Enrolled families are able to receive services valued at up to $1246
per month (double the federal SSI benefit).
DDD is currently transitioning children from an existing non-waiver Illinois
program known as 72D into the new waiver. In January 2008, the waiver program
will begin to take a limited number of new enrollees from the PUNS database. It
is anticipated that with the additional federal match dollars that come with
creating a new waiver, more children from the PUNS database will be able to get
services.
Application process for DDD programs:
Families must complete the PUNS form at a local DDD office, known as
Independent Services Coordination (ISC) offices. Staff will direct the family to
provide necessary documentation. To find the local agency, call 888.DDPLANS or
visit: http://www.dd.illinois.gov. Additional information on the PUNS
process and the Children's Support Waiver may be found at http://www.thearcofil.org
.
Apart from the PUNS process and Children's Support Waiver, the DDD also funds
some limited in-home respite care by local community agencies. Information on
these programs is also available at local ISC offices.
Programs in other states
All states have EI and Title V programs for children with special health care
needs, although their eligibility and services vary greatly. To find these
programs, visit http://www.medicalhomeinfo.org/screening/EHDIstateinfo.htmland
click on a state to find contact information for both types of programs. In
order to learn about the home and community based waivers available in your
state, visit: http://www.pascenter.org/state_based_stats/ .
Conclusion
Families of children who eventually get services frequently report that
initially they were discouraged from submitting applications or told their child
was unlikely to qualify for services. It is important for families and providers
alike to know that they have a right to complete an application and even if
denied, most programs have appeal processes in place. A detailed description of
rights and appeal processes may be found at: http://www.illinoisprobono.org/index.cfm?fuseaction=home.dsp_Content&contentID=784.
While there are numerous options for children with special health care needs,
the diversity and complexity of available programs can be difficult to
understand. However, these programs can make an enormous difference to families
that often struggle with the home care of these children. Thus, it is important
for providers to possess enough knowledge about available programs to refer
children appropriately and to advocate for their enrollment. | 
