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

• 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.

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• NPND has been asked to urge its Network to contact Senators from the following states Senators  and urge their Co-sponsorship:

· 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.