South Carolina Department of Disabilities and Special Needs Pervasive
Developmental Disorder Program
Legislative History
During the 2006 session of the South
Carolina General Assembly, parent advocates organized a grassroots initiative
seeking new legislation that would require insurance companies to provide
coverage for the treatment of a Pervasive Developmental Disorder (PDD). At the
time the insurance companies opposed this mandate. As a compromise to both help
families and hold insurance companies harmless, $3 million in non-recurring
funds was appropriated to the Department of Disabilities and Special Needs
(DDSN) by the General Assembly. These one-time funds came with specific
instructions to the agency, via a budget proviso, regarding the new program to
be coordinated with the Department of Health and Human Services (DHHS) to
provide therapies to young children diagnosed with a PDD.
During the legislative process it was
acknowledged that some children were receiving some services through the BabyNet program or through their school. It was clear that
this new program and new funds were not to replace or enhance these
pre-existing entitlement programs. Those are to continue. The new DDSN/DHHS
initiative is not an entitlement program and is to be separate from BabyNet and education services, thus not duplicating state
services.
Funding Issues
Data from MUSC about the prevalence of
PDD in children in
It was clear that all interested
families and their children who met the required criteria for participation in
the program could not be served. Therefore, in addition to requesting the
one-time $3 million appropriated be funded with recurring dollars, DDSN
requested an additional $4.5 million in its 2007-2008 budget request to serve
an additional 220 children with PDD. It was estimated that a total of $7.5
million could serve approximately 370, or about one-third of the total 1,100
children. This funding was approved by the General Assembly and the Governor
for FY 2007-2008.
Service Development
Children accepted in the Pervasive
Developmental Disorder (PDD) Program receive two types of services: 1) early
intensive behavioral intervention (EIBI) and 2) case management.
EIBI services seek to develop skills of
children in the areas of cognition, behavior, communications and social
interaction. Case management services assist children and their families in
gaining access to needed waiver and other State Medicaid plan services, as well
as medical, social, educational and other services.
The initial $3 million one-time service
funds were not available to DDSN until December 2006. Over the summer and early
fall of 2006, DDSN and DHHS completed a Medicaid waiver application, held a
public meeting attended by over 50 interested parents, advocates and providers,
and met with Centers for Medicare and Medicaid Services (CMS) officials. The
final version of the application was submitted for federal review and comment
on September 28, 2006, which usually takes up to 90 days. The federal
government (CMS) approved
Meanwhile, DDSN developed information
and referral strategies and application procedures, including the establishment
of a toll-free number. Information was shared with families and providers, sent
to the media and published on the Internet. Parents or families interested in
applying for services were encouraged to gather the necessary information and
documentation to prevent delay of their child's application process.
Application Response
and Process
The initial round of applications was
accepted from 8:30 A.M. Thursday, December 28, 2006, until 5:00 P.M. Friday,
January 12, 2007. Applications received during this time period were considered
by DDSN to be received at the same time. This was the fairest way for all
families to start on a level playing field since the funding was not enough to
serve every child. Using this process meant it did not matter where someone
lived, if they were privately paying for the service or if they were receiving
DDSN services.
On Wednesday, January 17, 2007,
applications were randomly selected one at a time and numbered in the order
they were drawn. This process continued until all of the applications received
by 5:00 P.M. Friday, January 12, 2007, had a number. Applications received or
postmarked after January 12, 2007, are added on a first-come, first-served
basis.
About 390 applicants were received in
the first round. DDSN expected that only about 140 to 150 children would be
able to participate in the new program at this time based on available funding.
Once numbered, the applications go
through the next step of the process in numerical order. This is the
Intermediate Care Facility/Mental Retardation (ICF/MR) level of care
determination. This process is required by Medicaid to confirm the child's
diagnosis of PDD and determine whether or not the child's services can be provided
through the PDD Medicaid waiver. Diagnostic evaluations for this process are
only repeated if they do not meet a quality standard. DDSN took as many initial
applications as possible through the ICF/MR level of care determination until
all slots were filled. The remaining applicants were placed on a waiting list.
After a child is accepted into the
program, the family chooses an Applied Behavior Analysis (ABA) Consultant from
a list of DDSN qualified Consultants who are specially trained in Pervasive Developmental
Disorders. The Consultant assesses the child, evaluating his/her individual
needs. If the child is already receiving EIBI services, the Consultant
evaluates the existing treatment plan and its effectiveness. If the child has
no preexisting plan, a more detailed assessment is required.
The Consultant forwards his/her
evaluations to DDSN. A treatment plan is approved authorizing the number of
hours of EIBI the child will receive based on individual needs. The Consultant
then coordinates the implementation of the treatment plan. Trained individuals
work with the child one-on-one in the child's home. During this year, DDSN
developed a service manual for all providers to use.
Results
As of June 30, 2007, a total of 140
children have been accepted in the Pervasive Developmental Disorder Program. Of
these 140 children, 89 meet Medicaid eligibility criteria, 33 are pending
Medicaid eligibility, and 18 (13 percent) are participating with 100 percent
state funds. There are 382 children on the waiting list. The new $4.5 million
appropriated for FY 2008 will serve approximately 350 children on this waiting
list.
The original estimate was to serve only
220 children from the waiting list. However, it was originally estimated that
only 60 percent of the children would be Medicaid eligible versus the current
rate of 87 percent. In addition, the original cost estimate was $35,200 per
child versus the current average of $38,783. These changes in current numbers
will result in more children being served.
Of the current PDD Program participants
and applicants, 84% are male and 16% are female. Ninety-five percent (95%) of
the children have a diagnosis of autism and 5% have other PDD diagnoses.
Children ages 3 through 6 comprise 67% of participants and children age 7 through
10 comprise 33%.
The age breakdown is as follows:
|
Age |
Percent |
Total |
|
3 |
18% |
|
|
4 |
21% |
|
|
5 |
18% |
|
|
6 |
10% |
67% |
|
7 |
13% |
|
|
8 |
10% |
|
|
9 |
7% |
|
|
10 |
3% |
33% |
|
|
|
100% |
The average budget per child is $38,783.
This equates to an average of 29 hours per week of applied behavior analysis
therapy for these children. The number of hours provided each child is
determined by the individual's initial assessment. This in-depth assessment
consists of a battery of four standardized tests. The provider monitors the
actual delivery of therapy performed by trained staff. After 12 months of
prescribed therapy, the battery of standardized tests will be repeated to
assess the progress made and the individual's new level of service need.
In the summer of 2006, DDSN set up
meetings to recruit EIBI providers. This first effort generated 5 qualified
providers. To date DDSN has recruited 13 qualified early intensive behavior
intervention providers. The effort to recruit additional providers is ongoing,
both in-state and outside of
Due to the enormous task of getting
approval of a new Medicaid waiver, creating eligibility criteria, creating
program and service criteria, determining and processing each child's
eligibility, and recruiting and educating providers, among other activities,
actual therapy services began the last quarter of the fiscal year. Therefore
DDSN is unable to report on the developmental progress of program participants
at this time. It is expected that results will be measurable after actual
service delivery is in process for at least one year.
FY 2008
A total of $7.5 million has been appropriated
to DDSN for the PDD Program. In order to prepare for the next year, during the
FY 2008 budget process, DDSN requested DHHS submit an amendment to the Centers
for Medicare and Medicaid (CMS) to increase the cap on the number of children
who can be served through the new PDD Medicaid waiver up to 550 individuals. On
August 1, 2007, DHHS received notice from CMS that the amendment was approved.
DDSN has made all the necessary preparations to ensure the next 110 children on
the waiting list have adequate records in the file to assure timely enrollment
in the PDD Program. DDSN anticipates being able to serve a total of
approximately 500 children with the funds appropriated.
In addition, DDSN and the University of South Carolina (USC) have entered into a new
collaborative agreement. DDSN will contract with USC to increase the capacity
of qualified