Medicaid Contract Purchasing SpecificationsChildren with Special Health Care NeedsPart 1Services for Children with Special Health Care Needs[Download a .pdf version of this document]
§101. In General §101. In General (a) Duty to Provide a Medical Home Contractor shall, for each enrolled child with special health care needs (as defined in §108(c)) identified under subsection (b), comply with the requirements of:
(b) Duty to Identify Enrolled Children with Special Health Care Needs Contractor, and each provider participating in Contractors provider network, shall comply with the requirements of §102 relating to identification of enrolled children with special health care needs.
(c) Basic Service Duties7 For each enrolled child with special health care needs (as defined in §108(c)), Contractor shall:
(d) Family Participation
Commentary: The following illustrative language would require Contractor to establish and maintain a Family Advisory Board internal to the Contractor. Another option would be for the state to establish and maintain such a Board to advise its Medicaid or other purchasing agency as well as the MCOs with which the state agency contracts. This option is not reflected in these purchasing specifications because it can not be implemented through language in a contract between the state agency and the MCO. Instead, such Board would have to be established under state law or regulation, or through administrative action by the sponsoring agency. For a summary of ongoing advisory committees used by 6 states (Colorado, Connecticut, Delaware, Massachusetts, Michigan, and New Mexico), see Table 21, pp. 158-162, of Kaye et al., Certain Children with Special Health Care Needs: An Assessment of State Activities and Their Relationship to HCFA's Interim Criteria, National Academy for State Health Policy (June 2000), http://www.hcfa.gov/medicaid/needsrpt.pdf.
§102. Identification of Children with Special Health Care Needs Commentary: These purchasing specifications assume that the MCO with which Purchaser is contracting enrolls a general population of children and families, not just children with special health care needs. In order to trigger any duties Purchaser may wish to impose on Contractor with respect to those enrolled children with special health care needs, Contractor must know whether a particular enrolled child has special health care needs. Often a child's disability is itself the basis for the child's categorical eligibility for Medicaid; for example, most states automatically extend Medicaid eligibility to children who qualify for Supplemental Security Income (SSI) payments based on disability.9 In addition, a child's eligibility category may be an indicator of special health care needs (e.g., children receiving foster care payments under Title IV-E). In these cases, the state Medicaid agency (or another state or local agency) is likely to know the child's special needs status. In other cases, however, the basis for the child's Medicaid eligibility does not reflect the child's special needs. The illustrative language in the following section is intended to assist purchasers in designing approaches to identifying these children from among the general population of enrolled children. For a review of the sources of information used by 4 states (Colorado, Delaware, Massachusetts, and Michigan) to identify children with special health care needs, see Table 6, pp. 44-52 of Kaye et al., Certain Children with Special Health Care Needs: An Assessment of State Activities and Their Relationship to HCFA's Interim Criteria, National Academy for State Health Policy, (June 2000) http://www.hcfa.gov/medicaid/needsrpt.pdf. To facilitate the exchange of information regarding the identity of children with special health care needs, Purchasers may wish to consider establishing interagency agreements or other arrangements with state Title V children with special health care needs programs, state mental health agencies, state or local education agencies and Part C lead agencies that have programmatic responsibilities for children with disabilities, developmental delays, and special health care needs. Purchasers could transmit such information to Contractors at the time of enrollment of a Medicaid-eligible child with special health care needs. Of course, the exchange and transmission of such information is subject to confidentiality and informed consent requirements applicable under state or federal law. For references to applicable federal rules, see §209(d) and (e). (a) Duty of Purchaser to Assist in Identification of Children with Special Health Care Needs10
Commentary: HCFAs "Draft Interim Review Criteria for Children with Special Needs" (June 4, 1999) provides: The State identifies and/or requires MCOs/PHPs to identify children with special needs. (p.1-2). HCFA's draft criteria do not specify an instrument for the identification. However, there are a number of tools Purchaser may wish to consider for use in identifying children with special health care needs. The following illustrative language assumes that such a tool would be administered by Contractor. There are other approaches to identifying children with special health care needs, including reliance upon an enrollment broker to perform this function; Purchasers interested in this option would address the issue in their contracts with the enrollment broker. A number of screening tools are available or under development. One tool is the Living with Illness Screening Tool developed by the Child and Adolescent Health Measurement Initiative (CAHMI) of the Foundation for Accountability (FACCT), www.facct.org. Another tool is QuICCC (Questionnaire for Identifying Children with Chronic Conditions), containing 39 questions for the family or caregiver (or the 19-question version of this instrument, called QuICCC-R); see R.E. Stein et al., The Questionnaire for Identifying Children with Chronic Conditions: A Measure Based on a Noncategorical Approach, Pediatrics (April 1997), pp. 513-521. The National Association of Children's Hospitals and Related Institutions (NACHRI), in conjunction with 3M, has developed a classification system using Clinical Risk Groups (CRGs); see Muldoon et al, "Profiling Health Service Needs of Populations Using Diagnosis-based Classification Systems," Journal of Ambulatory Care Management (1997), 20, pp. 1-18. (b) Identification of Children with Special Health Care Needs
§103. Scope of Benefit Commentary: It is common for states to carve out from their general Medicaid MCO contracts some of the services that children with special health care needs require. For example, a CHSRP review of 54 state contracts found three different types of Medicaid coverage for behavioral health services: (1) direct coverage (on a fee-for-service basis) under the state Medicaid plan; (2) coverage through a general service agreement with an MCO; and (3) coverage through a managed behavioral health carve-out agreement. Rosenbaum et al., Negotiating the New Health System, Special Report: Mental Illness and Addiction Disorder Treatment and Prevention, GW Center for Health Policy Research, March 1998, p. 27. Under current law, states may elect not to contract with MCOs for the full range of services to which beneficiaries are entitled under their state Medicaid plans. Instead, they may contract with an MCO for the provision of some services and carve out others. These carve out services, in turn, may be covered on a fee-for-service basis or through a risk contract with another MCO, or both. For example, in 1997 about two-thirds of the states excluded mental health services, dental services, and health-related services from their contracts with Medicaid MCOs. Ruth Almeida and Harriette Fox, 1997 State Medicaid Managed Care Policies Affecting Children, Maternal and Child Health Policy Research Center (March 1998), p. 6. Accordingly, the following illustrative language assumes that a state purchaser elects to carve out some services of importance to children with special health care needs from the purchasing agreement and to cover those services either directly under its state plan or through another contractor. (a) Covered Items and Services Contractor shall furnish, or arrange for the furnishing of, to each enrolled child with special health care needs (as defined in §108(c)) who is eligible for benefits under [drafter insert reference to state Medicaid program]:
(b) Items and Services for Which Purchaser Remains Responsible
§104. Care Coordination Services Commentary: The following illustrative language assumes that the Purchaser wishes to provide care coordination services to children with special health care needs through the contracting MCOs in which they are enrolled. It should be noted that states are not required to offer care coordination services to Medicaid beneficiaries generally or to this population in particular, and some states do not cover these services for this population. In addition, not all MCOs are organized to provide care coordination services to children with special health care needs or other enrolled populations through separate care coordinators; instead, they rely upon the treating physician to perform care coordination functions. Finally, if a state Medicaid program elects to cover care coordination services for this population, it may also elect to "carve out" such services from its purchasing agreements with MCOs and provide them on a fee-for-service basis through the state Title V agency or other state or local agencies, or through private organizations. For a review of the care coordination models used by Colorado, Delaware, New Mexico, Oregon, and Washington, see Rosenbach and Young, Care Coordination in Medicaid Managed Care: A Primer for States, Managed Care Organizations, Providers, and Advocates (March 2000) www.chcs.org. The federal Medicaid statute and implementing regulations do not contain a care coordination services category. Thus, it is not possible to state with certainty that the care coordination services set forth in the following illustrative language would qualify for federal Medicaid matching funds. That determination can be made only by HCFA. HCFA's published guidance on coverage of case management services is set forth in State Medicaid Manual at §430216, www.hcfa.gov/pubforms/pub45pdf/smm4t.htm. (a) In General Contractor shall comply with the requirements of this section relating to:
Commentary: The following illustrative language assumes that the family or caregiver of an enrolled child with special health care needs has the option of refusing to accept a care coordinator for the child. It also assumes that the family or caregiver has the option of declining to accept the particular care coordinator that Contractor wishes to assign to the child. The language would not, however, require Contractor to hire or subcontract with any particular care coordinator in order to meet the wishes of the family or caregiver. The family or caregivers choice would be limited to those care coordinators (including a primary care provider, if the family or caregiver so chooses) available within Contractors provider network under §204. (b) Assignment or Selection of Care Coordinator
(c) Use of State Title V CSHCN Program Personnel
Commentary: The experiences of families of children with special health care needs enrolled in an MCO under a Medicaid demonstration project has enabled evaluators to identify certain issues relating to care coordinators. Discussions with parent focus groups found that virtually none of the parents knew where or to whom they may file a complaint. Most parents said they would talk to their care manager if they had a problem. In addition, Few parents recalled having completed a Plan of Treatment for their child, and the majority said they had never seen or heard of a Plan of Treatment. Of the few parents who were familiar with it, most said they had been asked by their care managers to sign the document, but with no explanation of its contents. Some parents added that the Plan of Treatment was not updated frequently enough, and thus was seldom a reflection of their childs current needs. Abt Associates, Evaluation of the District of Columbias Demonstration Program, Managed Care System for Disabled and Special Needs Children, Second Annual Report (December 18, 1998), Submitted to Office of Strategic Planning, Health Care Financing Administration. The following illustrative language addresses these and other matters. (d) Responsibilities of Care Coordinator18 Contractor shall ensure that, in the case of an enrolled child with special health care needs (as defined under §108(c)) who has selected a care coordinator under subsection (a), the care coordinator, consistent with §107(b) relating to utilization management, shall:
Commentary: The illustrative language in paragraph (5) assumes that the MCO's care coordinator has the responsibility for assisting an enrolled child's family or caregiver in having payment made for services covered under a state's Medicaid program that are not the duty of the MCO. Another approach would be for the family or caregiver to be referred to appropriate state or local agencies.
Commentary: In tracking a childs progress under a care plan, the childs care coordinator will need to have access to information regarding the services provided to the child. The following illustrative language assumes that Contractor will have such information with respect to the services received by the child from providers participating in Contractors provider network, and that Purchaser will have information with respect to services received from providers outside of Contractors provider network that bill Purchaser for the care they furnish to the child. (e) Duty of Purchaser to Assist in Tracking Use of Out-of-Plan Services Purchaser shall make available on request, to the care coordinator of an enrolled child with special health care needs (as defined §108(c)), information relating to the payment by Purchaser of claims for items or services furnished to the child by providers not participating in Contractors provider network. §105. Care PlanCommentary: The following illustrative language would require Contractor to develop a care plan for each enrolled child with special health care needs. Children with special health care needs exhibit a wide variety of health conditions and disabilities. Care plans will vary depending upon the complexity of a childs health care needs: children with multiple diagnoses are likely to require more extensive care plans than those with less complex needs. Care plans will also vary over time as the needs of such children change. The following illustrative language is designed to identify the elements of a care plan regardless of the complexity of the childs needs at any given point in time. Interested purchasers may wish to consider the use of abbreviated care plans for children with less complex needs. For example, the American Academy of Pediatrics (AAP) recommends that, in the case of children with less complex health care needs, the care plan be incorporated onto the child health invoice (also known as the diagnosis or reimbursement form) in order to minimize the administrative burden on primary care physicians. Another alternative would be to limit the requirement for the preparation of a care plan to those children with more complex medical needs. (a) Duty to Develop Care Plan for Enrolled Children with Special Health Care Needs Contractor shall, consistent with the family participation requirements under §101(d)(1)(C), comply with the requirements of subsections (b), (c), and (d) in the case of an enrolled child:
Commentary: The illustrative language below assumes that the childs primary care provider is responsible for the development of the childs care plan. Another approach is to vest responsibility for development of the plan in a multidisciplinary team. This approach is reflected in GW CHSRP, Optional Purchasing Specifications: Medicaid Managed Care for Children with Behavioral Health Needs (forthcoming). (b) Development of Care Plan20 In the case of an enrolled child described in subsection (a), Contractor shall ensure that, within [ ] days of the date described in paragraph (3), the childs primary care provider shall, consistent with the consultation requirements of paragraph (1) and the family participation requirements of paragraph (2), develop and, consistent with paragraph (5), update a care plan for the child that complies with the requirements of subsection (c).
Commentary: The following illustrative language would require periodic updating of the care plan of each enrolled child with special health care needs. The updates would have to be done at a frequency determined by the contracting MCO and the purchaser through negotiations. The duty on the Contractor to update periodically would expire when the enrollee is no longer a child with special health care needs as defined in §108(c) -- i.e., is age 21 or older, or no longer has special health care needs.
Commentary: In some states, the care plan serves as a payment authorization, specifying the items and services that do not require prior approval from the Contractors utilization control procedures. In Michigan, the Individualized Health Care Plan (IHCP) for a child functions as the payment authorization. Kids Care of Michigan Provider Manual (9/30/98) pp. 1-12. For illustrative language implementing this approach, see §107(a)(5). (c) Contents of Care Plan A care plan for an enrolled child with special health care needs (as defined in §108(c)) developed under subsection (b) shall specify:
Commentary: Federal Medicaid law, §1903(c) of the Social Security Act, 42 U.S.C. §1396b(c), makes clear that States must pay for items and services covered under their state Medicaid plan even if the item or service is also required under a childs IEP or IFSP: Nothing in this title shall be construed as prohibiting or restricting, or as authorizing the Secretary [of HHS] to prohibit or restrict, payment [for services covered under Medicaid to a child with special health care needs] because such services are included in the childs [IEP or IFSP]. This statutory provision does not require a state to cover, under its state Medicaid plan, items or services that are optional under federal Medicaid law, even if those items and services could be covered under Medicaid and are required under the childs IEP or IFSP. Note however, that the Medicaid EPSDT benefit covers all services for which federal matching funds are available that an eligible child is discovered to need as a result of an EPSDT screening, whether or not such services are covered under the State [Medicaid program], §1905(r)(5) of the Social Security Act, 42 U.S.C. §1396d(r)(5). Thus, if a Medicaid-eligible child receives an EPSDT screen, and that screen indicates that a service described in that child's IEP (or IFSP) is medically necessary, the State Medicaid program is required to pay for the service (so long as the service is matchable under federal law). As discussed in the commentary to §103, the state Medicaid program may elect to cover some or all EPSDT services through contracts with MCOs. If the child is enrolled in an MCO, and the state has chosen to purchase the service through the MCO, the MCO is obligated to provide the service, even though the service is enumerated in the child's IEP (or IFSP). Under current law, Medicaid is the payer of first resort for medical services provided to children with disabilities pursuant to the [IDEA]. However, Medicaid coverage is not unlimited. For example, there are limits on what states may claim for school health-related transportation services for children with IEPs. See HCFA Letter to State Medicaid Directors, May 21, 1999, www.hcfa.gov/medicaid/smd52199.htm. A General Accounting Office report concluded: Both Medicaid and IDEA have an obligation to children with disabilities to ensure that they receive services that will best address their developmental needs, and coordination is essential to meet this obligation. State and local efforts, however, require federal guidance to communicate Medicaids coverage and documentation requirements .Recognizing this need, HCFA is developing additional guidance, which it expects to issue in the year 2000. GAO, Medicaid and Special Education: Coordination of Services for Children with Disabilities is Evolving (December 1999) GAO/HEHS-00-20, p. 18. HCFA has issued a clarification of its policy vis-à-vis state claiming for school health-related transportation services for children with IEPs under the IDEA in (1) a Letter to State Medicaid Directors (May 21, 1999), www.hcfa.gov/medicaid/smd52199.htm and (2) a draft Guide on Medicaid School-Based Administrative Claiming (February 2000), www.hcfa.gov. There has been some critical commentary on the draft Guide; for example, the Department of Education has recommended that HCFA revise the draft because, in its view, the draft "could be harmful by limiting access by school districts to Medicaid reimbursement for some activities that should be claimable ." HCFA testified before the Senate Finance Committee that "[o]nce we have reviewed the feedback, we expect to make changes before issuing a final Guide." Testimony of Tim Westmoreland, Director, HCFA Center for Medicaid and State Operations (April 5, 2000), www.senate.gov/~finance/4-5hcfa.htm. (d) Coordination of Care Plans with IFSPs or IEPs In the case of an enrolled child with special health care needs (as defined in §108(c)) who is receiving services under an IFSP (as defined in §108(g)) or an IEP (as defined in §108(f)) (whether or not at the time of enrollment), Contractor shall:
Commentary: The following illustrative language would clarify that the natural environment and least restrictive environment requirements of federal IDEA law apply to Contractors in the delivery of services through their own provider networks. In some states, early intervention services are provided by free-standing, state-certified agencies that do not participate in MCO provider networks. The following language would not impose any obligations upon Contractors with respect to services furnished to enrolled children by such free-standing, out-of-network agencies.
§106. GuidelinesCommentary: The development of clinical practice guidelines specific to children with special health care needs is in evolution. Some clinical performance measures have been developed for some conditions characteristic of children with special care needs, including chronic pediatric asthma, pediatric HIV, and schizophrenia in children and adolescents. For a database that relates these and other conditions to clinical performance measures, see the Agency for Health Care Policy and Researchs CONQUEST 2.0, http://www.ahrq.gov/qual/conquest.htm. The illustrative language below reflects the recommendations of expert reviewers involved in the development of these purchasing specifications. (a) Guidelines Contractor shall furnish or arrange for the furnishing of items and services covered under §103(a) to an enrolled child with special health care needs (as defined in §108(c)) in a manner which is consistent with [drafter insert one or more of the following guidelines]:
(b) Other Requirements Contractor shall comply with the requirements of Part 1B of MEDICAIDSPECS relating to the delivery of covered items and services. §107. Coverage Determination Standards and Procedures22 Commentary: The December 17, 1997 letter from HCFA to State Medicaid Directors regarding the BBA Medicaid managed care amendments states that each risk contract with an MCO must include provisions that address the responsibility of the managed care entity to furnish care and services when medically necessary in sufficient detail to ensure that beneficiaries receive needed services to which they are entitled under the contract. Note that, under §103, interested Purchasers and contracting MCOs could negotiate a list of items and services for which the MCOs would assume responsibility when medically necessary. In deciding whether the MCO is responsible for furnishing or paying for one of the listed items or services in the case of any individual enrolled child, a coverage determination is made. Thus, an item or service may be covered under §103 but not furnished or paid for because of an adverse coverage determination. The following section sets forth illustrative language framing coverage determinations for children with special health care needs. The following illustrative language does not contemplate automatic authorization of coverage for items and services requested from Contractor by a Title V CSHCN program on behalf of an enrolled child. However, the illustrative language in §101A(b)(6) of MEDICAIDSPECS, would provide a role for the Title V CSHCN program with respect to submission of opinions and evidence in connection with coverage determination decisions. In addition, Contractor could not, under §101A(c)(4) of MEDICAIDSPECS, deny coverage for an item or service on the ground that the item or service is identified in a plan of care developed by a Title V CSHCN program. (a) Coverage Determination Standards and Procedures
Commentary: The following language assumes that, in the case of prescriptions written by a physician participating in Contractors provider network, the prescription would be covered as prescribed by the physician if the drug is covered under the negotiated benefit package under §103(a). The language also assumes that, under applicable state law, Contractor would not be authorized to substitute generic drugs for brand name drugs prescribed by the treating physician whenever the physician specifies in writing that substitution is not appropriate through the use of such phrases as "do not substitute" or "no substitution."
(b) Role of Care Coordinator in Utilization Management29 Commentary: There is no consensus on the appropriate role for a care coordinator in the MCOs decision-making as to whether an item or service will be covered for an enrollee for whom the care coordinator is responsible. Some believe that, because of his or her knowledge of the enrollees circumstances, the care coordinator is the most appropriate person to make coverage determinations affecting that enrollee. Others believe that the care coordinators primary responsibility is to advocate within the MCO on behalf of the enrollee, and that requiring the care coordinator to manage the enrollees utilization of services would be inconsistent with this responsibility. The following illustrative language attempts to strike a balance between these two views by authorizing the care coordinator, with the consent of the child's family or caregiver, to provide information to the personnel making the coverage determination but not to participate directly in the determination itself.
§108. Definitions(a) Adolescent a child age [ ]31 through 20. (b) Care coordinator an individual who has demonstrated experience and appropriate training in the coordination of medical and related services to children with special health care needs and who is one of the following:
Commentary: The following definition combines criteria used by HRSA's Maternal and Child Health Bureau for purposes of Title V with the definition in the Medicaid statute (which is also the definition used in HCFA's "Draft Interim Review Criteria for Children with Special Needs," June 4, 1999). The six categories listed in the following illustrative language reflects the Medicaid statute under §1932(a)(2)(A) of the Social Security Act, 42 U.S.C. §1396u-2(a)(2)(A), as added by the Balanced Budget Act of 1997 (BBA), P.L. 105-33. A recent GAO analysis of this statutory definition concludes that "it does not cover some Medicaid-eligible children whose health conditions could merit recognition as exceptional and whose treatment in a managed care setting deserves to be closely monitored." General Accounting Office, Medicaid Managed Care: Challenges In Implementing Safeguards for Children with Special Needs (March 2000) GAO/HEHS-00-37, p. 15, www.gao.gov (c) Child with special health care needs a child under 2133 who has a chronic physical, developmental, or behavioral condition, and requires health and related services of a type or amount beyond that which is required by children generally34, including a child who, consistent with §1932(a)(2)(A) of the Social Security Act, 42 U.S.C. §1396u-2(a)(2)(A):
(d) Contractor the managed care organization doing business as [drafter insert name] that has entered into an agreement with Purchaser under [drafter insert name of purchasing document]. (e) Family or caregiver37 a natural or adoptive parent of a child, a grandparent or stepparent with whom the child lives, or an individual or entity that is a foster parent, legal guardian or other individual or agency with legal authority or responsibility to care for the child. (f) Individualized educational program (IEP)38 a plan of services developed by an educational agency pursuant to the Individuals with Disabilities Education Act (IDEA), 20 U.S.C. §1401(11), 34 C.F.R. §§300.15, 300.347, which sets forth the special education and related services required by a child. (g) Individualized family services plan (IFSP)39 a plan of services developed by an early intervention agency pursuant to the Individuals with Disabilities Education Act (IDEA), 20 U.S.C. §§1401(12), 1436(d), 34 C.F.R. §§303.14, 303.340, 303.344, which sets forth the early intervention services required by a child and the childs family or caregiver. (h) Natural environment as defined in the Individuals with Disabilities Education Act (IDEA), 20 U.S.C. §§1435(a)(16), 1436(d)(5), 34 C.F.R. §§303.12(b), 303.18, a setting, including the home, that is natural or normal for the childs age peers who have no disabilities. Commentary: In applying the primary care provider selection requirements under §203, the following definitions in (i) and (j) draw a distinction between a "pediatric professional" and a "pediatric specialist". As used by the American Academy of Pediatrics and in these specifications, the term "pediatric professionals" refer to physicians who are trained as specialists in pediatrics, including pediatric medical subspecialists and pediatric surgical specialists. Pediatric professionals could serve as primary care providers. On the other hand, "pediatric specialists" would not serve as primary care providers, but enrolled children would have access to such specialists through the child's care plan and under the access requirements in §205. While "pediatric professionals" are a subset of pediatric specialists, the latter category includes practitioners and clinics other than pediatricians, including child psychiatrists and psychologists. (i) Pediatric professional a physician who is trained as a specialist in pediatrics, including a pediatric medical subspecialist and a pediatric surgical specialist. (j) Pediatric specialist a provider (as defined in subsection (l)), including a pediatric professional (as defined in subsection (i)) who is a physician, child psychiatrist, child psychologist, or other health care practitioner who, with respect to the diagnosis, treatment, or management of a childs (or adolescents) illness, injury or condition, has specialized expertise (as evidenced by certification or licensure or other means of formal recognition) relating to the particular illness, injury, or condition of the child (or adolescent).40 (k) Primary care provider a provider (as defined in subsection (l)) that meets the requirements of §502(c) of Part 5 of MEDICAIDSPECS. (l) Provider a health care practitioner, clinic, hospital, school, or other entity licensed by the State to furnish medical, dental, mental health, or other health care services. (m) Provider network the set of providers that have entered into enforceable written agreements with Contractor that comply with the requirements of [drafter insert name of purchasing document] to furnish, or arrange for the furnishing of, covered items and services under §103(a) to enrolled children. (n) Purchaser [drafter insert name of state purchasing agency]. (o) Refer as used in this document, the terms refer and referral shall not be construed to authorize payment by Contractor for an item or service or obligate Contractor to pay for an item or service. (p) Other terms see Part 14 of MEDICAIDSPECS. Endnotes
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Commentary: There is no single definition of children with special health care needs that is commonly accepted. Definitions vary among states that enroll this population in Medicaid managed care as well as within states (e.g., definitions used by a state Title V agency may vary from that used by the same state's Medicaid agency). A recent GAO report gives the following example of this variation: " children in Michigan must meet the Title V definition of special needs, while those in Oregon must receive SSI or be in foster care." General Accounting Office, Medicaid Managed Care: Challenges in Implementing Safeguards for Children with Special Needs (March 2000), GAO/HEHS-00-37, footnote 8, p. 8, www.gao.gov. . For a review of the definitions of children with special health care needs used by 6 states (Colorado, Connecticut, Delaware, Massachusetts, Michigan, and New Mexico), see Tables 3 and 4, pp 17-33, of Kaye et al., Certain Children with Special Health Care Needs: An Assessment of State Activities and Their Relationship to HCFA's Interim Criteria, National Academy for State Health Policy, (June 2000) http://www.hcfa.gov/medicaid/needsrpt.pdf.
For purposes of this document, children with special health care needs are defined in §108(c) as children under 21 who have a chronic physical, developmental, or behavioral condition, and require health and related services of a type or amount beyond that which is required by children generally. This language is drawn from the definition in McPherson et al., A New Definition of Children with Special Health Care Needs, Pediatrics (July 1998) p. 137, which was endorsed in a work group convened by MCHB and AMCHP in October, 1998 and by the American Academy of Pediatrics (AAP). Using this definition, a recent analysis estimates that 18% of U.S. children under 18 years old had an existing special health care need in 1994-5. Newacheck, et al., "Access to Health Care for Children with Special Health Care Needs," Pediatrics (April 2000) p. 760-766, www.pediatrics.org.
For pediatrics, the standard of care for children with special health care needs is that of a medical home an approach to providing care that is accessible, family-centered, comprehensive, continuous, coordinated, compassionate, and culturally competent. A detailed explanation of this concept may be found in AAP, Managed Care and Children with Special Needs: Medical Home Checklist (1998), http://www.aap.org/advocacy/medhome/resourcesmedhomechecklist.htm. The purpose of the purchasing specification is to translate the concept of a medical home into an enforceable set of contractual duties that interested purchasers may wish to use in developing purchasing agreements with managed care organizations that serve children with special health care needs. This translation occurs at two levels: that of the Contractor, and that of the individual provider. Part 1 speaks to the Contractor's duties to operate in a manner consistent with the medical home approach; §204A addresses the duties of individual network providers to furnish a medical home to such children in their practices.