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DECEMBER 12, 1997 ..............................................................NUMBER 72


CHIP TELECONFERENCE

Families USA in cooperation with the National Association of Child Advocates, Children's Defense Fund, and the National Association of Children's Hospitals has established a series of teleconference calls about expanding state children's health insurance coverage - Child Health Insurance Program (CHIP) under the Social Security Act (SSA), Title XXI. Title XXI was established by The Balanced Budget Act of 1997 and enables States to extend health care coverage to uninsured children by a new State Child Health Insurance Program (SCHIP), the Title XIX Medicaid Program, or a combination of both programs. CHIP requires States to submit plans for approval by the Secretary of the Department of Health and Human Services in order to receive matching funds for providing health care coverage. The lead federal agency is the Health Care Financing Administration (HCFA) in cooperation with the Health Resources and Services Administration (HRSA) and the Maternal and Child Health Bureau (MCHB).

The teleconference calls are focused on specific issues regarding the development and implementation of CHIP. To participate in the calls, dial toll free (800) 360-0001 and ask for the "Children's Health Campaign Call." You can ask questions or just listen to the presentation and discussion. Each call is scheduled for 60 minutes. Listed below are the dates and times, subject, contact RSVP and a phone replay code. The phone replay code allows you to replay the conference call you missed. The phone number for the replay is (617) 528-0420 and enter the appropriate code for the conference you want. The replay call is not toll free.

DATE AND TIME; SUBJECT; RSVP CONTACT; and REPLAY CODE

*November 5, 1997; Issues Affecting Children with Special Needs; and the replay code is 110394.

*November 11, 1997; Medicaid or Separate State Program; and the replay code is 102190.

*December 3, 1997; Crowd Out - Will Employer Insurance Cover Drop; and the replay code is 100475.

*December 10, 1997; Getting a Seat at the Table and Finding State Matching Funds; and the replay code is 103945.

*December 17, 1997 (2PM EST, Wednesday); Coalitions, Media and Beyond: State Advocates Talk Strategy; Alejandra Briseno ((202) 662-3628, (202) 662-3540 fax or E-mail at cdhealth@childrensdefense.org); and the replay code is 102203.

*January 7, 1998 (2PM EST, Wednesday); Benefits: Covering Necessary Care for Children; Alejandra Briseno ((202) 662-3628, (202) 662-3540 fax or E-mail at cdhealth@childrensdefense.org); and the replay code is 102205.

*January 14, 1998 (2PM EST, Wednesday); A HCFA Update: Federal Interpretations of the New Law; Kathy White ((703) 684-1589 or E-mail kwhite@nachri.org); and the replay code is 102206.

*January 28, 1998 (2PM EST, Wednesday); Outreach and Coordination: Assuring Coverage in Fact, Not Just on Paper; Amy Checkoway ((202) 289-0776 or Email at amy@childadvoacy.org); and the replay code is 102207.

Want more information? Some, not all, of the conference calls have a Resource List. Contact Molly Modzelewski ((202) 662-3628, (202) 662-3540fax or E-mail at mmdozelewski@familiesusa.org) or Jeff Kirsch ((202) 628-3030 or E-mail at jkirsch@familiesusa.org) at Families USA.


IDEA/NPRM TELECONFERENCE

This Friday, December 12th, at 2PM EST, Section 614 of the Individuals with Disabilities Education Act (IDEA) and the corresponding regulation from the Notice of Proposed Rulemaking (NPRM) will be reviewed. Section 615 will be reviewed on Wednesday, December 17th at 2PM EST. Everyone is invited, even if you have not participate in the previous call! Want to join in? The phone number for the conference call is (904) 779-4713. This "904" call-in is a 50% split cost to the caller and NPND. A chart of the side-by-side comparison of IDEA/NPRM can be found on the NPND Web page or you can contact Heather Hebdon at (253) 565-2266, (253) 566- 8052fax , or by E-mail at wapave9@idt.net for a copy.


H.R. 2020

A short time ago a letter from the Voice of the Retarded (VOR) was circulated on their concerns and opposition to H.R. 2020. ADAPT (American Disabled for Attendant Programs Today), who is advocating for H.R. 2020, has prepared a statement responding to VOR's concerns. Below we have published in toto ADAPT's response:

December 1, 1997

You may have recently received a letter from the Voice of the Retarded concerning some of the provisions in H.R. 2020. The majority of the information contained in this letter is erroneous. The purpose of our memo is to give you the correct information on H.R. 2020. H.R. 2020, Medicaid Community Attendant Services Act, MiCASA (Spanish for my home) was introduced on June 24, 1997 by Speaker Newt Gingrich, would allow people with physical and mental disabilities, old and young, who are eligible for Nursing Home or Intermediate Care Facilities for the Mentally Retarded to choose to use those funds for a service called "Qualified Community-Based Attendant Services".

MiCASA is an attempt to make sense of our long term care system. The current system was designed 30 years ago and must be reformed. Over 80% of public funds are spent on institutional services when the vast majority of the older and disability community prefers home and community-based services. MiCASA is about choice. MiCASA is about bringing our communities together. MiCASA is about keeping families together. Though there is much fear of any changes in the current system, as illustrated by the Voice of the Retarded letter, Congress must address the critical issues that MiCASA brings to the table.

The letter states MiCASA "... redirects existing Medicaid dollars from developmental centers to community-based attendant care services."

TRUTH - MiCASA allows people with mental and physical disabilities, or their families who are eligible for nursing home or ICF-MR services TO CHOOSE to use these dollars for Qualified Community-Based Attendant Services. Nothing in this bill redirects money from developmental centers to community-based attendant services or forces an individual or family to choose this program. It allows the money to follow the individual into the setting of their choice instead of any one particular setting. If an individual or family wants public money to be spent in a community rather than an institutional setting, that would be allowed by H.R. 2020. MiCASA allows for REAL CHOICES.

The VOR letter also states MiCASA "purports to provide greater choice to individual with disabilities by creating a new open-ended entitlement under Medicaid ..."

TRUTH - MiCASA is not an open-ended entitlement. It is limited by the eligibility criteria for nursing homes and ICF-MR's and there is specific language on page 5, lines 13-17 that says "...the aggregate amount of the Federal expenditures for such individuals in a fiscal year does not exceed the total that would have been expended for such individuals to receive such institutional services in the year..."

In addition VOR's letter states that MiCASA "...lacks basic quality assurance and adequate safeguards against fraud and abuse."

TRUTH - MiCASA has extensive quality assurances and safeguards against fraud and abuse. In addition to the existing Medicaid general protections, MiCASA uses the protections of health, safety and welfare promulgated under section 1930 (h)(1), Community Supported Living Arrangements and allows for similar sanctions. For individuals using the non-agency model MiCASA directs the Secretary of HHS to develop additional regulations to protect the health, safety, and welfare. "These regulations shall be designed to maximize the consumers' independence and control." [Page 9 lines 1-21] Each State must also have minimum qualifications and training for provider staff, financial operating standards and a consumer grievance procedure for any agency providing services under MiCASA. Each agency provider is required to be surveyed at least once each year on an unannounced basis. [Page 8 lines 3-9] MiCASA also has requirements that States provide a system of monitoring boards consisting of family members, consumers, neighbors and providers as well as a requirement to develop an ongoing monitoring of the delivery of attendant services and the effect of those services on the health and well-being of each recipient. [Page 8 lines 19-23] MiCASA does allow for various delivery options to include agencies, direct cash, vouchers or use of fiscal agents. Though the letter outlines fraud and abuse in the Medicare program it does not address any problems in the delivery systems outlined in MiCASA. MiCASA has protections written into the bill to avoid fraud and abuse.

The letter states that "... an individual's medical needs are not even considered when eligibility is determined."

TRUTH - Medical needs are certainly considered in the eligibility determination for MiCASA services though functional need determines the level of services an individual would receive. To be eligible for MiCASA services you must be "entitled to nursing facility services or intermediate care facility services for the mentally retarded and who require such services based on functional need." [Page 2 lines 6-13] The language in MiCASA "...functional need without regard to age or disability" is an attempt to get away from the labeling of people with disabilities and the fragmentation of the current system based on these labels. Medical services needed by people with mental and physical disabilities are provided for in MiCASA This is different than just having a medical label for funding purposes. Health-related tasks can be assigned or delegated by a health professional as dictated by the States' Medical and Nurse Practices Acts to qualified unlicensed individuals.

The letter states "The bill disregards individuals who are non-communicative and severely or profoundly mentally retarded, by not taking into account the need for surrogate decision makers."

TRUTH - MiCASA eligibility criteria includes individuals who are "non-communicative" and have cognitive disabilities of all types. MiCASA tries to develop a system of services based on need, not medical or professional labels. During the assessment of functional need, if it is found that a surrogate is necessary to maximize consumer control and independence, involvement of a surrogate would be written into the individuals plan of service and would be provided in the manner chosen. Individuals with cognitive and/or developmental disabilities should not be categorized as incapable of making any decisions just because of an IQ score or because of verbal abilities.

ADAPT wants to work with Congress to bring about the changes necessary to reform our long term care system. The debate will be heated but it should be honestly discussed. Erroneous information spread through Congress does nothing but cause lack of trust and puts into question the motives of those putting out the false information. If you have any questions about the above information or H.R. 2020 please call us at (512) 442-0252 or (303) 333-6698.

Many advocates, including NPND, have actively supported the issues addressed in H.R. 2020. We commend ADAPT for their untiring and unwavering effort in support and promotion of the legislation.


CDF's CHILD CARE

The Children's Defense Fund (CDF) has initiated the campaign "Make '98 a Banner Year for Child Care!" Quality child care and after-school activities are a daily concern for millions of American working parents. Child care and after-school activities have an important impact on the shaping the way our children think, learn and behave for the rest of their lives, but little is paid to the quality of these experiences. CDF will be working with individuals and groups across the country to improve the quality and affordability of child care at all levels: federal, state and local. Stay tuned for more information on this important campaign for our children. For further information on how you can participate visit the Children's Defense Fund Web site at http://www.childrensdefense.org or call (202) 662-3557. You can help now by calling the White House (Maria Echaveste, Director of Public Liaison at (202) 456-2930 or E-mail president@whitehouse) to stress loud and clear that the President and Congress must enact a comprehensive child care package that speaks to the quality of care; affordability; and expands and improves after-school options for our children and youth. Do it Now! THANKS!


COMBINED FEDERAL CAMPAIGN (CFC )

The Combined Federal Campaign is almost through for 1997. Friday Fax is one of the programs of NPND supported in part by CFC funding. If you would like to consider the National Parent Network on Disabilities, our number is 1532. THANKS FOR YOUR CONSIDERATION!