-----Original Message-----
From: Virtual Majordomo Account [mailto:[log in to unmask]]On
Behalf Of Justice For All Moderator
Sent: Monday, March 13, 2000 10:49 PM
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Subject: GRASSLEY-KENNEDY FAMILY OPPORTUNITY ACT OF 2000
Justice For All
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GRASSLEY-KENNEDY FAMILY OPPORTUNITY ACT OF 2000
In 1999 a bipartisan congressional coalition worked long and hard with
the broad disability community to pass the Ticket to Work - Work
Incentives
Improvement Act of 1999.
Now it's time for us all to come together again and take the next
logical
step in expanding health care.
Please read the attached documents - and then send your stories, calls
and
letters to your congressional Members before March 20.
SUMMARY
Access to Health Care Coverage
Expanding Medicaid Options for States. States will be able to offer
Medicaid coverage to children with
severe disabilities living in middle income families through a buy-in
program. Cost-sharing on a sliding
scale up to the full premium cost will be required within certain
guidelines that protect lower income
families. Currently, families must stay impoverished, become
impoverished, place their child in an out
of home placement or simply give up custody in order to secure the
health care services their child
needs under Medicaid.
Demonstration Program. A time-limited demonstration program would allow
states to extend Medicaid
coverage to children with potentially severe disabilities who without
access to the health care services
available through medicaid can be reasonably expected to become severe
enough to qualify them for SSI.
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/or special health care needs. These
centers, staffed by actual 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 disabilities and/or 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
disabilities and/or special needs and health professionals.
--
THE GRASSLEY-KENNEDY FAMILY OPPORTUNITY ACT OF 2000
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 recent family survey of 20 states, 64% of 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 2000 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.
--
Why access to Medicaid is so important for children with special needs
For children with special needs, the Medicaid package is the only health
care benefit that ensures
access to the medically necessary services that a child' medical
condition requires. Examples of
several specific benefits that children with special needs do not
receive under a number of Chip/SCHIP
programs include:
* Rehabilitation/long term therapies such as occupational therapy,
physical therapy speech language therapy
* Home and Community based services
* Appropriate mental health services
* Customized durable medical equipment
* Nutritional supports such as those needed by infants and young
children with metabolic disease, such
as PKU or Short Bowel Syndrome
Why making Medicaid available to children with disabilities and special
needs is a fiscally responsible
decision
* It will allow families to make a decent wage and get out of poverty.
* It will allow children to leave the SSI rolls without the fear of
losing their health care coverage.
* It will allow families to buy and keep their homes and save to meet
the educational and other needs
of their children.
* It will allow special needs children to grow up with their families
and live in their communities -
instead of parents giving up custody of their children, placing them in
out of home placements or in
institutions at an extraordinary cost to the taxpayer.
Please send your testimony, stories, calls and
letters to your congressional Members before March 20.
CAPITOL SWITCHBOARD
202-224-3121 Gets You All Congress Members
Write Congress?
http://www.congress.org
Please send copies to:
Senator Edward M. Kennedy
202-224-4543 in D.C.
202-224-5128 Fax in D.C.
617-565-3183 Local Phone
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--
Fred Fay
Chair, Justice For All
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http://www.jfanow.org
Register to Vote Online at http://www.fec.gov/votregis/vr.htm
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