Family Opportunity Act of 2005
January 31, 2005
Summary of the Major Provisions of the Family Opportunity Act of 2005
(also known
as the "Dylan Lee James Act")
Problem
The
National Health Interview Survey (NHIS) and current census data shows that 8%
of children in this country have significant disabilities, many of whom do not
have access to critical health care services they need. In order for these
families to get needed health services for their children, many are forced to
stay impoverished, become impoverished, put their children in out of home
placements, or simply give up custody of their children so that their
child can maintain eligibility for health coverage through Medicaid. Many
employer health plans and a number of CHIP/SCHIP programs do not cover
essential services that these children need to maintain and prevent
deterioration of their health status. Medicaid can provide these
comprehensive services.
In a
2003 survey of 20 states, families with special needs children report they are turning
down jobs, turning down raises, turning down overtime, and are unable to save
money for the future of their children and family so that they can
stay in the income bracket that qualifies their child for SSI and/or Medicaid.
Currently,
less than 4% of the 850,000 children receiving social security benefits leave
the Social Security rolls due to increased family income, however many would if access to needed health services was available. More than half
the States in this country are reporting increasing rates of families giving up
custody of their children in order to secure needed health care services and
supports.
The
Family Opportunity Act of 2005 is intended to address the two greatest barriers
preventing families from staying together and staying employed
(1) lack of access to appropriate services, and (2) lack of access to the
advocacy and assistance services they need to help cut the "red tape" to
meeting their children's health care needs.
Access to Health Care Coverage
Expanding Medicaid Coverage Options: A new optional eligibility category
will allow states to expand Medicaid coverage to children with disabilities up
to age 18, who would be eligible for SSI disability benefits but for their
income or resources. This option builds on previous reforms including the
provision enacted in the Balanced Budget Act of 1997 (BBA) and the Ticket to
Work and Work Incentives Improvement Act of 1999.
These provisions permit states to offer a Medicaid buy-in for disabled children
who would be eligible for SSI disability benefits but for their income, who are
in families earning up to 300% of poverty ($58,500.00 for a family of four).
- In order for a family to participate in the medicaid buy-in for their disabled child or children, a state must require a parent to take employer-offered insurance within the following guidelines: (1) the employer offers family coverage under a group health plan, and (2) the employer contributes at least 50% of the total cost of the annual premium for the coverage.
- If such coverage is attained by the
family, the state is required to reduce the premium charged for the buy-in, in an
amount that reasonably reflects the parent's premium contribution for private
coverage for their child with a disability.
- Participating states may charge premiums up to the full cost of the premium as long as that premium does not exceed 5% of family incomes up to 200% of the poverty level and 71/2% of family incomes between 200-300% of the poverty.
- The state may waive payment of a premium in any case where the state determines that requiring a payment would create an undue hardship.
Alternatives to Psychiatric Residential Treatment Facilities for Children
- The bill provides funds for
demonstration projects in ten States to examine the effectiveness of home and
community based alternatives to psychiatric residential treatment facilities for medicaid
enrolled children.
Restoration of Medicaid Eligibility
- Restores only the medicaid eligibility for children meeting
the "presumptive eligibility" requirements under SSI without having to wait
until the "first day of the
month following" the establishment of eligibility.
Access to Health Information and Resources
Establishing Family to Family Health Information Centers: The bill provides funds for establishing health information centers to assist and
support families of children with disabilities and special health care needs.
These centers, staffed by both parents of children with special needs and
professionals, would provide technical assistance and accurate information to
other families on various health care programs and services available and
appropriate for children with special needs, including identifying successful
health delivery models. In addition, these centers would act as a resource to
healthcare insurers, providers, and purchasers in developing ombudsman models
for collaboration between families of children with special needs and health
care professionals.
Program Phase-In
Eligible children will be phased-in over a four year period:
- 0-6 year olds - 2008
- 7-13 year olds - 2009
- 14-18 year olds - 2010
The CBO cost estimate for the program is $872 million /5 years.
