Senate Bill S9448

                                 
BILL NUMBER: S9448

SPONSOR: BASKIN
 
TITLE OF BILL:

An act to amend the mental hygiene law, in relation to adding Down
syndrome to the definition of developmental disability and to expanding
such definition to include certain individuals below the age of ten

 
PURPOSE:

Adds Down syndrome to the definition of developmental disability and
expands such definition to include certain individuals below the age of
ten.

 
SUMMARY OF SPECIFIC PROVISIONS:

Sections 1 and 2 amend mental hygiene law.

Section 3 sets the effective date.

 
              

JUSTIFICATION:

This bill will align New York's standard for determining developmental
disability in line with the federal Developmental Disabilities Assist-
ance Bill of Rights Act of 2000. Under the current law, children under
the age of seven can be determined provisionally eligible for OPWDD
services. This includes the Medicaid waiver program, with a medical
diagnosis and a showing of a limitation in 3 or more areas of living:
self-care, language, learning, mobility, self-direction, independent
living, and economic self-sufficiency.

However, assessments to determine such limitations are not geared
towards the newly born or young infants. Nonetheless, these qualifying
evaluations are what determine accessibility to OPWDD services, includ-
ing the Medicaid waiver program, which is crucial for newborns and
infants with disabilities. Because of the testing requirements, families
are routinely encouraged not to apply for OPWDD eligibility until chil-
dren can undergo the testing - as late as age six to eight, according to
OPWDD disability determination guidelines.

Research shows that children born with Down Syndrome are at an increased
risk for conditions affecting multiple organ systems, often presenting
in infancy or very early childhood - and requiring surgical, medical, or
therapeutic interventions to manage. Studies show that approximately 50%
of infants with Down Syndrome present with cardiac conditions, struc-
tural abnormalities that may require surgical correction in infancy, an
increased risk of childhood leukemia, seizure disorders, endocrine,
neurological, hematological, and oncological conditions that can all
present at infancy but would be ineligible for OPWDD and the Medicaid
waiver program due to the current testing protocols.

This bill not only provides that babies and children under the age of 10
can be provisionally eligible with a diagnosis of a congenital or
acquired condition and a statement by a medical provider that the child
has a high probability of having functional limitations later in life,
but it automatically qualifies infants up to the age of four for the
Medicaid waiver program and then provisionally, from age four and up.

 
LEGISLATIVE HISTORY:

New bill.

 
FISCAL IMPLICATIONS:

To be deteimined.

 
EFFECTIVE DATE:
Immediately.