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Volume 16, Issue 3
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Spring 2004 |
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| published quarterly by: The New Hampshire Challenge, Inc. P.O. Box 579, Dover, NH 03821-0579 |
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In This Issue
Top Stories |
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Once again they came to the State House. Groups of parents, children and disability advocates traveled to Concord to spend a sunny late winter morning in room 210 of the Legislative Office building at a Finance Committee hearing on House Bill 1428. They came to speak and listen and make some sense of the turmoil swirling around the proposed changes to Katie Beckett, which is the Home Care Program for Children with Severe Disabilities (HC-CSD).
HC-CSD enables families to care for their children with disabilities at home without giving up the benefits Medicaid would extend to them in an institution.
HB 1428 seeks to:
- Place a moratorium on the new eligibility rules proposed by the Department of Health and Human Services (DHHS);
- Create a staff position at DHHS to assist families to obtain reimbursement from their insurance carriers for home care;
- Establish a Commission to study the Katie Beckett program and report to the Legislature;
- Authorize the DHHS to loan equipment to families;
- Permit the DHHS to collect reimbursement from health carriers.
According to Representative Peter Burling (D-Cornish) who sponsored the bill, "This program and the problem (of the proposed changes) are so important that a bipartisan effort is behind this bill." He stated that he attended the DHHS hearings in Claremont and Concord where Commissioner Stephen described the problem of cost transfer on the part of health carriers, whereby they refer families to Katie Beckett Medicaid instead of paying for covered expenses.
Burling also appreciates the frustration of families who are continually denied reimbursement by health insurance companies. Representative Burling agrees that insurance companies should pay their share and that the DHHS should have the capacity to recover third party (insurance) payment for some of these costs. "It is critical that the state pursue third party payment and to see that children aren't harmed by dawdling" on the part of the health carrier, he said.
He also believes that families should not have to go up against the insurance industry alone and the proposed new position at the DHHS will mitigate this.
He went on to describe the need for a Commission to study the Katie Beckett waiver program. The Commission would review the eligibility criteria, service configuration, and the role of private health insurance in home care. It will also evaluate the impact of any changes to the program.
The Commission would be made up of two senators; two members of the house of representatives; the DHHS Commissioner; a representative appointed by the Parent Information Center; a parent of a child served under Katie Beckett appointed by the Council for Children and Adolescents with Chronic Health Conditions; one representative from the New Hampshire Pediatric Society; one service provider appointed by the speaker of the house; and four members of the public, 2 appointed by the speaker of the house and 2 appointed by the president of the senate.
The Commission will have until November 2004 to report its findings and recommendations for proposed legislation to the State Legislature. Representative Michael Whalley (R-Alton), another sponsor of the bill, described the home care waiver as a win/win situation. "Children are getting the best care with their parents at home" he asserts. With home care and inclusion in local schools individuals with disabilities are now productive members of the community, Whalley said.
DHHS Commissioner John Stephen said that a commission to study Katie Becket is a good idea but he has problems with other parts of the bill, especially the moratorium on rule making until 2006. "We have to have rules for this program and we have no rules presently." Stephen declared but when pressed by one of the committee members, he admitted that there were rules in place although they had expired.
Stephen also stated he did not want institutions to define "institutional level of care." That determination should be made by DHHS he said.
He stated that the DHHS picks up the slack when health carriers won't cover expenses. When Representative Neil Kurk (Weare) asked if the state could collect enough from health insurance carriers to make up the $500,000 proposed budget cut without cutting off services to families, Stephen said he didn't know.
Representative Edward Densmore (Franconia), expressed frustration with the changing numbers of children on the program. There were "1,247 last week and now 1,029" he stated. He asked Commissioner Stephen exactly how many New Hampshire children are currently served by the Katie Beckett program and how many will be ineligible under the proposed rule changes.
Jane Hybsch, Administrator in the Office of Health Planning and Medicaid, said her office has reviewed the files of 386 of the 1,029 children in the program and estimated that approximately 250 children will become ineligible under the new rules. She explained the earlier discrepancies in the numbers of children on the program by saying that some have moved on to other situations.
In written testimony, Claudia Ferber from the New Hampshire Chapter of the National Association for the Mentally Ill (NAMI) described the unique challenges for families of children with serious emotional disorders.
According to her testimony, a family would have to access 18 hours of expensive counseling services for their child before he/she would qualify for services under the proposed new rules. Insurance reimbursement for counseling can be very limited and most families cannot afford to pay out of pocket.
There are few other good options. The family could get the child into the Juvenile Justice System, which will lead to services but will leave the child with another label. The parents could admit to neglect in order to access services for the child through the child protection system, a move that negatively stigmatizes the family.
She went on to say that psychiatric hospitals that serve young children are few and it is difficult to get admission for children under 11 years old. This makes families dependant on Katie Beckett Medicaid in order to care for their children with emotional disabilities at home. Robin Dennis, a parent, illustrated the benefits of Katie Beckett in her written testimony.
Becky Thompson, one of the parents who testified, pointed out that other states still have institutions and public residential schools which lower the number of children served under Katie Beckett, whereas, in New Hampshire, Katie Beckett is the only program. Her son, Kendall, has Down syndrome and would not be eligible under the proposed rules.
When Kendall was born, the Thompsons applied for Katie Beckett and he was deemed eligible. Kendall does not have the serious medical conditions that sometimes occur with Down syndrome but has medical needs that surpass his same age peers.
When he cut his fingertip, a cast was put on his arm because he would not leave the bandage alone and the wound couldn't heal properly. His dental treatment must be performed under general anesthesia in a day surgery facility, whereas a typical seven year old would be treated in the dentist's office.
Like many families, the Thompsons are dependant on health insurance that is controlled by an employer. But unlike others, they have a child who requires a higher than average level of care and the Katie Beckett program has enabled them to care for him in their home while accessing the extra services he needs.
"When Laconia (State School) closed, New Hampshire promised we would be able to keep (our children) at home with state help," Ms. Thompson declared. She wants Kendall to have a fulfilling life like his older sister but sees the changes in Katie Beckett as a threat to her goal.
Michelle Winchester, health policy analyst with the Institute for Health, Law, and Ethics at Franklin Pierce Law Center, voiced her concerns about the proposed changes and her support for HB 1428. In written and verbal testimony, she outlined the reasons she agrees with the formation of a study commission before any changes are made to Katie Beckett. She stated that the Department of Health and Human Services has failed to determine:
- How many children will lose Medicaid eligibility;
- How many parents will be forced to leave employment in order to provide the services now provided under the Medicaid program;
- How many children have no private health insurance coverage or will not have any is parents are forced to leave the workforce;
- What services are covered under the Medicaid program and not covered under private insurance plans;
- If families will be able to absorb the cost of care now being reimbursed under Medicaid and not covered under their private insurance plans; and
- The extent of the property tax increase that will be necessary to meet the costs of services in schools now being reimbursed through the federal match under Medicaid.
Attorney Winchester went on to say that cost sharing by health carriers must be looked at carefully and pointed out that creating a position at DHHS to assist families with insurance claims will serve as a way to evaluate the role of health insurance in the lives of children with disabilities. It would also ensure that Medicaid remains the payor of last resort in accordance with state and federal law.
Senator Dick Green (R Rochester) also spoke in favor of the bill, voicing his concerns about local school district budgets and the impact on property taxes. He reminded the committee of the Timothy W. Supreme Court case which originated in his district. The court ruled that every child is entitled to a public school education and that the buck stops at the local school district. In other words, if the funding stream from the federal Medicaid program is reduced, the services will continue but at the expense of local taxpayers.
Richard Cohen, Director of the Disabilities Rights Center, labeled the proposed changes to Katie Beckett eligibility as draconian and spoke in favor of HB 1428. He went on to outline his reasons for supporting the bill and for opposing the changes proposed by DHHS. First, he expects that the bill will send a message to health carriers that are not living up to their responsibility and advising families to utilize Medicaid instead. "This bill should reverse that trend," he said.
He described the Katie Beckett option as "a highly effective program cost-wise and service-wise," which has not been abused by the families as has been suggested by some. "It supplements the family as the focal point of care rather than supplanting it with a more expensive and institutional mode of care." he said. He suggested several reasons for the growth in the program from 400 children in 1994 to 1,200 children in 2003:
- Increase in the general population in New Hampshire;
- Increased incidence of severe disability due to increased neonatal survival rates of children with disabilities;
- Insurance cutbacks in coverage;
- Less reliance on institutional model of care;
- Increased cost of health care;
- Increased identification (of children with severe disabilities);
- Increased awareness of the program.
Cohen maintained that the consequences of severe restrictions on the program could be widespread. He suggested that a study of the program should address the questions of: potential harm to children and families; the impact on family finances; the possibility of cost shifting to other state and local agencies; the impact on school districts resulting from loss of 50% federal Medicaid to Schools for services to students with disabilities; the fiscal impact of loss of federal Medicaid revenue to the state; and the possible increase in institutionalization rate if the home supports are discontinued.
Finally, Attorney Cohen supports keeping the current rules in place because he questions the legality of the proposed DHHS rule changes. He said the level of care requirements are so restrictive they may be in violation of federal Medicaid law. Cohen also believes that if the proposed rules were implemented, the state might be in violation of the American with Disabilities Act.
The Finance committee decided to refer HB 1428 to the Division III work session where it was unanimously approved. On March 23, 2004 the House Finance Committee voted unanimously to place HB 1428 on the House "regular" calendar for April 8 to be voted on by the House floor. On April 8, the bill passed. It has been sent to the Senate where it will be assigned to a committee.
Katie Beckett Bill Scheduled for Public Hearing in Senate
A hearing has been scheduled for HB 1428 (the Katie Beckett bill) in the Senate. The Senate Public Affairs Committee (Sen. Roberge (C), Sen. Larsen (VC) Sen. Barnes, Sen. Green, Sen. Morse) will hear testimony on this bill on April 28, 2004, in Room 105-A of the State House in Concord at 8:30 a.m.
The release of the performance audit by the Legislative Budget Assistant (LBA) may have an impact on the bill, which received widespread support in the House. For information about that audit, please see the commentary by Michelle Winchester, attorney at the Institute for Health, Law and Ethics at the Franklin Pierce Law Center in Concord.
The full report is available online at www.gencourt.state.nh.us/lba/audit.html. |
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Related Stories:
Katie Beckett Audit Released
Katie Beckett Law
Proposed changes to Katie Beckett regulations |
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