MARCH 31, 2000
NO. 180
TOPICS IN THIS ISSUE INCLUDE:
NEW LEGISLATION INTRODUCED TO HELP PARENTS
FAMILY OPPORTUNITY ACT OF 2000 - S. 2274
LATE BREAKING NEWS
NEW LEGISLATION INTRODUCED TO HELP
PARENTS
FAMILY OPPORTUNITY ACT OF 2000 - S. 2274
This issue of the Friday Fax, along with Parent Ties, will provide in-depth information on the Family Opportunity Act introduced on March 22, 2000 by Senators Charles Grassley (R-IA), Edward Kennedy (D-MA), James Jeffords (R-VT), and Tom Harkin (D-IA). Access the NPND website for the full text of S. 2274: www.npnd.org.
Parent's Point of View
Jackie Golden, Project/Program Manager for NPND, was present at the press
conference on March 22nd and highlights the parent's perspective. During
the press conference parents shared stories about the complexity of their
lives without access to Medicaid.
Melissa Arnold, a parent originally from Iowa, was accompanied by her sons
Adam and Daniel. Melissa spoke of how she was forced to move across the
country to the state of Maryland to access the health care her son Adam
needed. Adam was born with a short thighbone, which required lengthening
through multiple surgeries. Melissa needed to locate a physician who could
handle her son's treatment, and then she had to figure out how to pay for
the service. She located a physician in Maryland who could provide
treatment for her son, but she had to move to Maryland and become a
resident. She took a job that would not put her out of the income range to
qualify for Medicaid. Eventually Melissa was promoted, but she did not
accept any income increases since she would lose her son's Medicaid. When
Melissa's oldest son, Daniel, took a summer job to prepare for college, his
income bumped the total family income out of the range for Medicaid.
Melissa received a bill from Social Security stating that she owed $2,000
because Daniel received an income. On top of this, they lost Adam's
Medicaid benefits.
Marcie Roth, accompanied by her daughter Jessica, shared that Jessica at
age 12 suffered a stroke that left her temporarily blind and immobile. She
suffered from headaches and a learning disability, as well as dealt with
mental health issues. Marcie, a known advocate in the disability community,
stated, "All my knowledge about systems didn't help my kids get the help
they needed." Marcie's family didn't qualify for Medicaid; instead she
tried to make due with her employer insurance. It was inadequate for
Jessica's needs. Jessica, without the supports and medical treatment she
desperately needed was forced to use only what her family could afford.
Marcie felt she was letting her children down because she could not afford
to cover the ever-growing expenses that her employer's health plan did not
cover. Jessica had difficulty in school and eventually dropped out due to
lack of supports. Jessica, a bright, energetic young woman, plans to obtain
her GED and attend college. Her mother still struggles with the demands of
providing the supports she needs, as well as dealing with the health issues
of her son.
Jackie Golden spoke about her son, Joshua, who also attended the press
conference. Joshua, who is a young man with Angelman Syndrome, did not
qualify for Medicaid because his parents made just over the limit allowed
by Social Security and Medicaid. The Golden's had to try to make ends meet
on their own. The demand of the medication costs alone was $400.00 per
month, and there was the cost of therapies, diapers and equipment not
covered through employer's health insurance. The situation eventually
totally broke the Golden's financially, emotionally, and physically. Jackie
spoke of having to make a heart wrenching decision of finding a place for
Joshua outside of their home, so the entire family could survive. Had the
Golden's received the Medicaid they desperately needed, Joshua would have
never left the Goldens home. Jackie stated that she wished these stories
were not the norm: but unfortunately they are.
These situations could have been prevented had the Family Opportunity Act been put in place. Families currently cannot receive the Medicaid support their children need to keep the family together. The Family Opportunity Act would change this.
GRASSLEY-KENNEDY-JEFFORDS-HARKIN Family Opportunity Act of 2000 (S. 2274)
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,
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 will 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.
Option for States to Include Children Receiving Hospital Psychiatric
Services in Home and Community-Based Waivers. States would be permitted to
include children with disabilities receiving hospital psychiatric services
in state home and community-based services waivers.
· 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 both parents of children with special needs and
professionals, will provide technical assistance and information to
families on health care programs and services available and appropriate for
children with disabilities and/or special needs.
PROBLEM
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.
ACTION NEEDED
This family friendly, family supportive legislation will help families of
children with disabilities to receive Medicaid. We need to work hard
together to ensure this act becomes a law. We must urge our Senators to
co-sponsor this legislation. We must act to gain co-sponsorship just like we
"effectively" did with the Work Incentives Improvement Act of 1999. Our
Senators need to know how important this act will be to families caring for
a child with a disability.
Contact your Senators, especially the members of the Senate Finance
Committee (contact information listed below) and encourage strong
bipartisan support of S. 2274. Contact them in Washington, D.C. and in your
home state during Easter break.
Senate Finance Committee Members
William Roth, (R-DE) Chairman comments@roth.senate.gov 202-224-2441/ 202-228-5798 (fax) |
Daniel Moynihan, (D-NY) Ranking Member senator@dpm.senate.gov 202-224-4451 / 202-228-0406 (fax) |
Chuck Grassley, (R-IA) chuck_grassley@grassley.senate.gov 202-224-3744 / 202-224-6020 (fax) |
Max Baucus, (D-MT) max@baucus.senate.gov 202-224-2651 |
Orrin Hatch, (R-UT) senator_hatch@hatch.senate.gov 202-224-5251 / 202-224-6331 (fax) |
John Rockefeller, (D-WV) senator@rockefeller.senate.gov 202-224-6472 / 202-224-7665 (fax) |
Frank Murkowski, (R-AK) webmail1@murkowski.senate.gov 202-224-6665 / 202-224-5301 (fax) |
John Breaux, (D-LA) / senator@breaux.senate.gov 202-224-4623 / 202-228-2577 (fax) |
Don Nickles, (R-OK) / senator@nickles.senate.gov 202-224-5754 / 202-224-6008 (fax) |
Kent Conrad, (D-ND) / senator@conrad.senate.gov 202-224-2043 / 202-224-7776 (fax) |
Phil Gramm, (R-TX) phil_gramm@gramm.senate.gov 202-224-2934 / 202-228-2856 (fax) |
Bob Graham, (D-FL) bob_graham@graham.senate.gov 202-224-3041 / 202-224-2237 (fax) |
Trent Lott, (R-MS) / senatorlott@lott.senate.gov 202-224-6253 / 202-224-2262 (fax) |
Richard Bryan, (D-NV) / senator@bryan.senate.gov 202-224-6244 / 202-224-1867 (fax) |
James Jeffords, (R-VT) vermont@jeffords.senate.gov 202-224-5141 / 202-228-5044 (fax) |
Robert Kerrey, (D-NE) qmail@kerrey-cms.senate.gov 202-224-6551 / 202-224-7645 (fax) |
Connie Mack, (R-FL) / connie@mack.senate.gov 202-224-5274 / 202-224-8022 (fax) |
Charles Robb, (D-VA) / senator@robb.senate.gov 202-224-4024 / 202-224-8689 (fax) |
Fred Thompson, (R-TN) senator_thompson@thompson.senate.gov 202-224-4944 / 202-228-3679 (fax) |
. |
We urge organizations to write a letter in support of the Family Opportunity Act (S. 2274) to the leaders of the Senate Finance Committee: Senator Roth and Senator Moynihan (see contact information above) asking for a Hearing and a Markup of S. 2274.
NPND has been asked to urge its Network to contact Senators from the following states Senators and urge their Co-sponsorship:
Shelby (R-AL) | Warner (R-VA). |
McCain (R-AZ) | Kyl (R-AZ); |
Nighthorse-Campbell (R-CO) | Allard (R-CO) |
Coverdell (R-GA) | Cleland (D-GA); |
Craig (R-ID) | Crapo (R-ID) |
McConnell (R-KY) | Bunning (R-KY); |
Sarbanes (D-MD) | Landrieu (D-LA) |
Cochran (R-MS); | Mikulski (D-MD) |
Ashcroft (R-MO) | Bond (R-MO) |
Hagel (R-NE); | Burns (R-MT); |
Domenici (R-NM); | Bingaman (D-NM) |
Frist (R-TN) |
· Contact your Representatives and let them know about this great piece of
legislation in the Senate.
MESSAGE
Urge your Senator to cosponsor the Family Opportunity Act of 2000, S. 2274.
Our children's lives are depending on this act passing.
CONTACT INFORMATION: www.senate.gov / www.house.gov
/ Capitol Switchboard:
202-224-3121
Forward any issues raised by your Senator, or Senate Staff to the following
individuals:
Republican Senators: pat_morrissey@labor.senate.gov
or hope_hegstrom@aging.senate.gov;
Democratic Senators: connie_garner@labor.senate.gov
. Include the name of the Senator or staff
person(s), along with the issue(s) raised. Pat, Hope and Connie in turn
will work directly with these Senate and staff people on the Hill.
LATE BREAKING NEWS - STAY TUNED NEXT WEEK....
NPND has learned that Senator James Jeffords (R-VT) will be announcing new
support for IDEA some time next week.