Medicaid Contract Purchasing Specifications

Children with Special Health Care Needs

Part 2. Delivery of Services for Children with Special Health Care Needs

[Download a .pdf version of this document]

§201. Enrollment and Disenrollment
§202. Information to Enrolled Children
§203. Provider Selection and Assignment
§204. Provider Network
§204A. Medical Home
§205. Access Standards
§206. Relationships with Other State and Local Agencies
§207. Quality Measurement and Improvement
§208. Data Collection and Reporting
§209. Enrolled Child Safeguards
§210. Remedies for Noncompliance
§211. Other Applicable Federal and State Requirements

§201. Enrollment and Disenrollment

Commentary: The selection of primary care providers and pediatric specialists is an issue of great importance to children with special health care needs and their families. There are two basic approaches to beneficiary choice in Medicaid managed care. The more common is to offer the beneficiary a choice between two or more MCOs and, once enrolled in an MCO, a choice among primary care providers. The other approach is to offer the beneficiary a choice among primary care providers and, once that selection has been made, to assign a beneficiary to an MCO based on its affiliation with the provider. Both of these approaches are reflected in Part 4 of MEDICAIDSPECS, referenced in §203 below.

The following illustrative language can be used by purchasers in implementing either approach. However, in the case of purchasers that elect to offer a choice between MCOs, the criteria under which beneficiaries choose among plans (rather than practitioners) would not be reflected in an agreement such as this between a purchaser and an MCO. Instead, they might set forth in an agreement between a purchaser and an enrollment broker or in state Medicaid plan provisions or regulations. The AAP recommends that “every effort is made for Medicaid beneficiaries to make an informed choice when choosing a managed care plan. Such efforts should include the use of face-to-face counselors. When participants do not choose, and must be assigned to a plan, the criteria used to assign them should include current and previous relationships with primary care and specialty clinicians, location of clinicians, assignment of other family or household members, choices by other members in the service area, and capacity of managed care organizations to provide special care or services appropriate for the participants.”

See AAP's Medicaid Policy Statement, http://www.aap.org/policy/RE9918.html.

(a) Enrollment and Disenrollment Procedures

(1) In General — Contractor shall comply with the requirements of Part 2 of MEDICAIDSPECS to the extent consistent with the requirements of this section.

(2) Nondiscrimination — Contractor shall comply with the requirements of §1301(b)(1) of MEDICAIDSPECS prohibiting discrimination in enrollment on the basis of health status or the need for health services.

(3) Involuntary Disenrollment — Contractor shall comply with the requirements of subsection (e) relating to involuntary disenrollment of a child with special health care needs (as defined in §108(c)) for reasons other than loss of eligibility for Medicaid.

(b) Duties Related to Children Receiving Treatment at Time of Enrollment — In the case of a child with special health care needs (as defined in §108(c)) who at the time of enrollment is receiving services under an IEP (as defined under §108(f)) or IFSP (as defined under §108(g)), Contractor shall comply with the requirements of §105(d).

(c) Duties Related to Children at Time of Disenrollment — Contractor shall comply with the requirements of §§204-205 of MEDICAIDSPECS.

(d) Voluntary Disenrollment

(1) Inaccurate Provider Information — Consistent with §401(d) of MEDICAIDSPECS, Contractor agrees that Purchaser has the authority and the responsibility to disenroll from Contractor for cause an enrolled child with special health care needs (as defined in §108(c)) if:

(A) Contractor fails to provide to the child (and the child’s family or caregiver) accurate, current information regarding participation of providers in Contractor’s provider network; and

(B) the family or caregiver relies upon such information when enrolling the child with Contractor.

(2) No Appropriate Pediatric Specialist — In a case described in §203(f)(2)(C) (relating to disenrollment in the event that no pediatric specialist is available), Contractor shall promptly notify the family or caregiver of the enrolled child with special health care needs (as defined in §108(c)) of the manner in which the family or caregiver may request disenrollment by Purchaser.

(e) Involuntary Disenrollment⁴¹

Commentary: The following illustrative language assumes that under the State’s Medicaid program, the authority to disenroll a beneficiary from an MCO rests with the Purchaser Medicaid Agency, or with the enrollment broker used by the Agency, but not with the MCO.

(1) In General — Contractor may not request that Purchaser terminate enrollment of an enrolled child with special health care needs (as defined in §108(c)) who is eligible for [drafter insert reference to state Medicaid program] and who has not requested to disenroll.

(2) Request to Purchaser — Contractor may request that Purchaser terminate the enrollment of an enrolled child with special health care needs (as defined in §108(c)) who is eligible for [drafter insert reference to state Medicaid program] and who has not requested to disenroll only if Contractor documents to Purchaser, in such form and manner as Purchaser specifies, each of the following:

(A) the child is engaging in disruptive or abusive behavior;

(B) the child’s behavior does not result from a mental illness or addiction disorder;

(C) the child’s behavior will seriously impair Contractor’s ability to furnish items and services to the child or to other enrollees; and

(D) if the child, is under treatment, arrangements have been made to ensure completion of, or avoid interruption of, the treatment.

(3) Notice — If Purchaser, based on a request by Contractor under paragraph (2), terminates the enrollment of an enrolled child:

(A) Purchaser shall notify, in writing, Contractor and the enrolled child (and the enrolled child’s family or caregiver) of the termination at least [ ] days prior to the effective date of termination; and

(B) Contractor shall arrange (at Contractor’s expense) for the transfer of the child’s medical records to the successor managed care plan or provider assuming responsibility for care of the child within [ ] days of request by the child’s family or caregiver or successor managed care plan or provider.

§202. Information to Enrolled Children

Commentary: The following illustrative language would require Contractor to provide information to newly enrolled children with special health care needs through an enrollee handbook (including content and understandability requirements), a provider directory, and other means specified in the illustrative language at Part 3 of MEDICAIDSPECS, www.gwu.edu/~chsrp. Subsection (b) would supplement these generic requirements for an enrollee handbook with additional elements specific to children with special health care needs.

(a) In General — Contractor shall comply with the requirements of Part 3 of MEDICAIDSPECS to the extent consistent with the requirements of this section.

(b) Contents of Enrollee Handbook — Contractor’s enrollee handbook shall contain the following information relating to the delivery of services for a child with special health care needs:

(1) items and services covered under §103(a);

(2) items and services that remain the duty of Purchaser under §103(b);

(3) an explanation of the manner and frequency in which [drafter insert reference to state's Medicaid EPSDT benefit] covered under §103(a) are to be furnished;

(4) specific instructions on where and how to obtain the items and services that remain the duty of Purchaser under §103(b), including:

(A) how to access transportation services; and

(B) the manner in which the child should present for care in emergency rooms that are staffed by personnel unfamiliar with the child’s special health care needs;⁴²

(5) development and implementation of a care plan described in §105;

(6) access to primary care providers and pediatric specialists under §203;

(7) assistance available from a care coordinator under §104(d);

(8) accommodations made by Contractor as required by the Americans with Disabilities Act, 42 U.S.C. §12101 et seq.;

(9) grievance and appeal procedures under [drafter insert reference to relevant provisions in purchasing document] and state fair hearing rights under §209(c); and

(10) opportunities for participation on the Family Advisory Board established and maintained by Contractor under §101(d)(3).

§203. Provider Selection and Assignment

(a) In General — Contractor shall comply with the requirements of Part 4 of MEDICAIDSPECS to the extent consistent with the requirements of this section.

Commentary: The following illustrative language would require Contractors to give families and caregivers of enrolled children the option of choosing as the child’s primary care provider for their medical home either (1) a primary care practitioner or (2) a physician who is trained as a specialist in pediatrics, including a pediatric medical subspecialist and a pediatric surgical specialist, termed a “pediatric professional” as recommended by the American Academy of Pediatrics. The language would also require Contractors to ensure access by enrolled children to appropriate “pediatric specialists” for specialty services. While there is some overlap between “pediatric professionals” and “pediatric specialists,” the latter category includes practitioners and clinics other than pediatricians, including child psychiatrists and psychologists. For further detail, see §§108(i) and (k).

(b) Selection of a Primary Care Provider — In the case of an enrolled child with special health care needs (as defined in §108(c)), Contractor shall offer the family or caregiver of such enrolled child (or in the case of an adolescent, the adolescent) the option of designating as the child’s primary care provider a provider described in paragraph (1) who meets the requirements of paragraph (2).

(1) A provider described in this paragraph is a provider participating in Contractor's provider network who furnishes a medical home to an enrolled child under §204A(c) and who is:

(A) a primary care provider (as defined in §108(k)); or

(B) a pediatric professional (as defined in §108(i)).

(2) The requirements of this paragraph are that the provider:

(A) has the capacity, in light of other patient care responsibilities, to assume primary care provider responsibilities under [drafter insert reference to relevant provisions of purchasing agreement] for the child;⁴³

(B) has the expertise to provide primary care services to a child with special health care needs; and

(C) meets the travel and service waiting time requirements under §205(b).

Commentary: The following illustrative language assumes voluntary enrollment by a child with special health care needs into the MCO. In states operating Medicaid managed care programs under a § 1932 state plan option, children with special needs are expressly exempted from mandatory enrollment, including auto- or default enrollment, into an MCO, §1932(a)(2)(A) of the Social Security, 42 U.S.C. §1396u-2(a)(2)(A). Under the illustrative language below, a child would be assigned to a primary care provider by the MCO only if the child had voluntarily enrolled in the MCO and, having been offered a choice of primary care providers under subsection (b) above, had not selected a primary care provider within a specified period of time.

(c) Assignment of Non-Selecting Children to Primary Care Providers — Consistent with §403(a)(2)(B) of MEDICAIDSPECS, in the event that the family or caregiver of an enrolled child with special health care needs (as defined in §108(c)) (or in the case of an adolescent, the adolescent) does not select a primary care provider under subsection (b) within [ ] days of enrollment, Contractor shall assign the enrolled child to:

(1) a primary care provider participating in Contractor’s provider network who:

(A) meets the requirements of subsection (b)(1); and

(B) is accessible to the child under §205(b); or

(2) a pediatric specialist participating in Contractor’s provider network who:

(A) meets the requirements of subsection (b)(2); and

(B) is accessible to the child under §205(c).

(d) Reselection of a Primary Care Provider — In the case of an enrolled child with special health care needs (as defined in §108(c)) who has selected (or been assigned to) a primary care provider under subsections (b) and (c), if the primary provider is no longer willing to assume the responsibilities of a primary care provider for the child, Contractor shall:

(1) permit the family or caregiver of the child (or in the case of an adolescent, the adolescent) to select another primary care provider under subsection (b); or

(2) if the family or caregiver (or adolescent) does not select a primary care provider under subsection (b) within [ ] days of notification by Contractor of the right to select another primary care provider, assign the child under subsection (c).

(e) Reassignment of a Child with Special Health Care Needs to a Primary Care Provider

(1) Grounds for Reassignment — In the case of an enrolled child with special health care needs (as defined in §108(c)) who has selected a primary care provider under subsection (b), or who has been assigned to a primary care provider under (c), Contractor may reassign the child to another primary care provider only if the primary care provider meets the requirements of subsection (b)(2) and one of the following three conditions applies:

(A) the child or the child’s family or caregiver has requested reassignment to a different primary care provider;

(B) the child’s current primary care provider no longer participates in Contractor's provider network;⁴⁴ or

(C) the child's current primary care provider:

(i) reduces the number of enrolled children the provider will accept as patients for the remaining term of the provider's written agreement with Contractor relating to participation in Contractor's provider network; or

(ii) is, after [ ] months of responsibility as a primary care provider with respect to the child, no longer willing to assume such responsibility and certifies in the child’s medical record that reassignment of the child to another primary care provider will not:

(I) compromise the treatment of the child’s special health care needs; or

(II) interrupt the child's access to covered prescription drugs; or

(III) disrupt the child’s access to pediatric specialists.

(2) Notification — Contractor shall not involuntarily reassign an enrolled child under paragraph (1) unless Contractor has notified the child (and the child’s family or caregiver) in writing at least [ ] weeks prior to the effective date of the reassignment of:

(A) the effective date of the child’s reassignment to a different primary care provider; and

(B) the name, mailing address, phone number, practice site, practice hours, and the bus, subway line, or other public transportation serving the practice site.

(f) No Pediatric Specialist Available as Specialty Care Provider⁴⁵

Commentary: This illustrative language addresses the inability of an enrolled child with special health care needs to find an accessible pediatric specialist who participates in Contractor’s provider network to treat the child's special health care needs in a timely manner. In such a circumstance, the language below suggests three alternatives: (1) the MCO could refer the child to an appropriate pediatric specialist not participating in the network; (2) the child's family or caregiver could select a non-participating pediatric specialist; or (3) the child could be allowed to disenroll. Purchasers and potential Contractors should review these alternatives carefully for operational and fiscal feasibility in light emerging state case law on institutional negligence (see Jones v. Chicago HMO LTD., Illinois Supreme Court (Docket No. 86830, May 18, 2000).

(1) No Appropriate Pediatric Specialist — With respect to an enrolled child with special health care needs (as defined in §108(c)), Contractor shall comply with the requirements of paragraph (2) if:

(A) no pediatric specialist (as defined in §108(j)) who participates in Contractor’s provider network and who meets the travel and service waiting time requirements under §205(c) and has the capacity to assume the responsibilities of providing specialty care services identified in the child’s care plan under §105 to the child; or

(B) a pediatric specialist who has been treating the child terminates (voluntarily or involuntarily) participation in Contractor’s provider network and there is no other pediatric specialist described in subparagraph (A) to whom Contractor is able to refer the child.

(2) Duty to Arrange for Pediatric Specialist — In a case described in paragraph (1), Contractor shall:

(A) refer the child to an appropriate pediatric specialist who does not participate in Contractor's provider network and who meets the travel and service waiting time requirements under §205(c) and has the capacity to assume the responsibilities of providing specialty care services identified in the child’s care plan under §105 to the child;

(B) permit the family or caregiver to select for the child a pediatric specialist who does not participate in Contractor’s provider network and reimburse the specialist for items and services covered under §103(a) in the same amount that the specialist would be paid under [drafter insert reference to state Medicaid program] on a fee-for-service basis for furnishing the item or service; or

(C) permit the family or caregiver to request the voluntary disenrollment of the child from Contractor under §201(d)(2) (relating to disenrollment).

(3) Notice — In the case described in paragraph (1), Contractor shall, within [ ] of the inability to find a pediatric specialist or the termination, notify the family or caregiver of the child of Contractor's duties under paragraph (2):

(A) in writing; or

(B) through the child's care coordinator under §104(d)(5).

§204. Provider Network

(a) In General — Contractor shall comply with the requirements of:

(1) Part 5 of MEDICAIDSPECS⁴⁶ to the extent consistent with the requirements of this section;

(2) the requirements of this section relating to primary care providers, pediatric specialists, care coordinators, composition of network, out-of-network arrangements, provider selection and retention, and reimbursement; and

(3) the requirements of §204A (relating to written agreements with providers to furnish a medical home for enrolled children).

(b) Primary Care Providers — Consistent with §502 of MEDICAIDSPECS, Contractor shall ensure that the number of primary care providers (as defined in §108(k)) participating in Contractor’s provider network (or accessible through out-of-network arrangements) is sufficient, consistent with the travel time and service waiting time requirements of §205(b), to enable Contractor to meet its duty under §101(a) to provide a medical home to each enrolled child with special health care needs (as defined in §108(c)). In determining sufficiency, Contractor may include pediatric professionals (as defined in §108(i)) selected by families or caregivers under §203(b)(1)(A).

(c) Pediatric Specialists — Contractor shall ensure that the number of pediatric specialists (as defined in §108(j)) participating in Contractor’s provider network (or accessible through out-of-network arrangements) is sufficient, consistent with the travel time and service waiting time requirements of §205(c), to enable each enrolled child with special health care needs (as defined in §108(c)) to have access under §105(c)(4) and §205(c) to an appropriate pediatric specialist for specialist services identified in the child’s care plan under §105(b).⁴⁷

(d) Care Coordinators Participating in Contractor’s Provider Network — Contractor shall include in its provider network a number of care coordinators (as defined in §108(b)) that is sufficient to ensure that each care coordinator shall be responsible under §104(d) for no greater than [ ]⁴⁸ enrolled children with special health care needs at any given time.

(e) Composition of Provider Network

Commentary: In general, MCOs have two options for developing the provider capacity to deliver covered services to enrollees. They could recruit all of the needed primary care and specialist practitioners and facilities into one or more provider networks. Or, in cases where they are unable to recruit the necessary type or number of providers into their networks, they could arrange for referrals of enrollees to out-of-network providers. From the MCO’s standpoint, the inclusion of practitioners and facilities in their provider networks is generally preferable because it gives them more ability to control the cost and quality of the services which they have contracted to deliver. From the purchaser’s standpoint, the most important consideration would be ensuring that the necessary practitioners and facilities are accessible to enrolled beneficiaries for covered services in a timely manner, and that if the necessary practitioners are not participating in contractor’s network, they are actually accessible to enrollees.

The following illustrative language is drafted to permit purchasers and contractors to negotiate among these different options. For example, a purchaser and contractor could agree that sufficient numbers of each of the necessary types of providers will be included in the contractor’s network. They could then use subsection (g) as a checklist for delineating the desired composition of the network. If all provider types so designated were included in the contractor's network, the language at subsection (f) regarding out-of-network arrangements would be unnecessary. In the alternative, a purchaser and contractor might decide that particular types of providers cannot, given market circumstances, realistically be recruited into the contractor’s provider network. In such cases, language such as that suggested at subsection (f) may be necessary to ensure the accessibility of such out-of-network providers to enrollees.

(1) Duty — Contractor shall ensure that Contractor’s provider network (as defined in §108(m)) at all times includes providers of each of the types specified in subsection (g) in sufficient numbers to ensure compliance with the access requirements of §205.

(2) Providers Not Participating — If Contractor is unable to secure the participation of providers of each of the types specified in subsection (g) in sufficient numbers to ensure compliance with the access requirements of §205, Contractor shall enter into out-of-network arrangements under subsection (f) with respect to the providers necessary to carry out Contractor's duty under paragraph (1).

(f) Out-of-Network Arrangements

(1) In General — Contractor shall make arrangements that meet the requirements of §510 of MEDICAIDSPECS and paragraph (2) with the providers described in subsection (e)(2).

(2) Arrangements — Contractor shall ensure that, with respect to each of the providers who do not participate in Contractor's provider network through whom Contractor furnishes items or services covered under §103(a) to enrolled children with special health care needs (as defined in §108(c)):

(A) Contractor has on file a letter from the provider representing the provider’s intent to treat enrolled children with special health care needs if referred by Contractor or a provider participating in Contractor’s provider network; and

(B) Contractor has verified that the provider:

(i) participates in [drafter insert name of state Medicaid program]; or

(ii) does not furnish items or services to [drafter insert name of state Medicaid program] beneficiaries on a fee-for-service basis but holds a valid Medicaid provider number.

Commentary: The following illustrative language is intended to allow purchasers and contractors to negotiate the types of providers that contractor will make available to enrolled children with special health care needs. As discussed above, these providers may participate in contractor's provider network or may furnish services out of network. The mix between participating and out-of-network providers will vary over time depending upon market conditions, provider preferences, contractor business strategies, and other factors. The listing of providers identified in the following paragraphs (1) through (3) is found in Peggy McManus, Maternal and Child Health Policy Research Center, Evaluating Managed Care Plans for Children with Special Health Needs: A Purchaser’s Tool, www.ichp.edu. Note that under the illustrative language at §205, contractors would also be subject to requirements relating to sufficient numbers of certain types of providers to ensure accessibility to covered services.

(g) Types of Providers — For purposes of subsections (e) and (f), the types of providers described in this subsection are:

(1) primary care practitioners in each of the following:

(A) pediatrics;

(B) adolescent medicine;

(C) family medicine;

(D) obstetrics/gynecology; and

(E) internal medicine;

(2) pediatric medical subspecialists in each of the following:

(A) allergy and immunology;

(B) cardiology;

(C) child and adolescent psychiatry;

(D) critical care;

(E) dermatology;

(F) developmental/behavioral medicine;

(G) emergency medicine;

(H) endocrinology;

(I) gastroenterology;

(J) genetics;

(K) hematology/oncology;

(L) infectious disease;

(M) neonatology/perinatology;

(N) nephrology;

(O) neurology;

(P) physical medicine and rehabilitation;

(Q) pulmonology; and

(R) radiology;

(3) pediatric surgical subspecialists in each of the following:

(A) anesthesiology;

(B) neurosurgery;

(C) ophthalmology;

(D) oral surgery;

(E) orthopedics;

(F) otolaryngology;

(G) pediatric surgery;

(H) plastic surgery;

(I) pulmonology; and

(J) urology;

(4) hospitals or medical centers specializing in the care of children;

(5) the following practitioners with pediatric expertise:

(A) nurses;

(B) child and adolescent psychologists and other mental health practitioners;

(C) social workers;

(D) physical therapists;

(E) occupational therapists;

(F) speech therapists;

(G) respiratory therapists;

(H) home health providers;

(I) nutritionists;

(J) dentists;

(K) orthodontists; and

(L) physiatrists.

(6) care coordinators (as defined in §108(b));

(7) the following programs:

(A) inpatient mental health treatment furnished by [drafter insert names of fully accredited psychiatric community hospitals];

(B) residential treatment furnished by [drafter insert names of programs];

(C) therapeutic group home services furnished by [drafter insert names of programs]; and

(D) intensive day treatment services furnished by [drafter insert names of programs]; and

(8) entities that furnish early intervention services to infants, toddlers, and their families under Part C of the Individuals with Disabilities Education Act, 20 U.S.C. §1431 et seq.

(h) Provider Selection and Retention — Consistent with §501(c) of MEDICAIDSPECS, Contractor:

(1) shall not discriminate against providers who care for children with special health care needs (as defined in §108(c)) in:

(A) selecting or retaining physicians and other providers for participation in Contractor’s provider network; and

(B) referring enrolled children to providers for treatment; and

(2) shall, in reviewing the practice revenues and expenses (actual or projected) of a physician or other provider participating in Contractor’s provider network, take into account the professional time and skill (and the related costs) attributable to the treatment of children with special health care needs (as defined in §108(c)) for purposes of determining the physician's or provider's:

(A) compensation; or

(B) continued participation in the network.

(i) Reimbursement

Purchasers may find it useful to review Negotiating the New Health System (3rd Ed.) which provides other options relating to payment terms used by state agency purchasers in contracting with Medicaid MCOs in 1996. These options may be found at Table 7.2, Vol. 2, Part 4, pages, 7-94 through 7-174, www.gwu.edu/~chsrp.

(1) In General — Contractor shall comply with the requirements of paragraphs (2) through (4).

Commentary: §1932(f) of the Social Security Act, 42 U.S.C. §1396u-2(f) requires that MCOs pay health care providers for delivering items and services covered under Medicaid risk contracts on a timely basis consistent with §1902(a)(37)(A) of the Act, 42 U.S.C.§1396a(a)(37)(A) (e.g., 90 percent of clean claims are paid within 30 days of receipt), unless the provider and the MCO agree to an alternate payment schedule.

(2) Prompt Payment to Providers Participating in Contractor’s Provider Network — Contractor shall make payment for items and services covered under §103(a) furnished to an enrolled child with special health care needs by a provider that participates in Contractor’s provider network in a manner that is no less prompt than that required under §1932(f) of the Social Security Act, 42 U.S.C. §1396u-2(f).

(3) Prompt Payment to Providers Not Participating in Contractor’s Provider Network⁴⁹ — Contractor shall make payment for items and services covered under §103(a) furnished to an enrolled child with special health care needs by a provider that does not participate in Contractor’s provider network in a manner that is no less prompt than that required under §1932(f) of the Social Security Act, 42 U.S.C. §1396u-2(f).

(4) Financial Risk — With respect to any arrangement for the compensation of a physician participating in Contractor’s provider network for the furnishing of items and services covered under §103(a) to enrolled children with special health care needs (as defined §108(c)), Contractor shall comply with the requirements of §1903(m)(2)(A)(x) of the Social Security Act, 42 U.S.C. §1396b(m)(2)(A)(x), 42 C.F.R. §417.479, relating to physician incentive plans.

§204A. Medical Home

Commentary: As discussed in the commentary before §101, the pediatric 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. See AAP, Managed Care and Children with Special Needs: Medical Home Checklist (1998), http://www.aap.org/advocacy/medhome/resourcesmedhomechecklist.htm. The illustrative language in Part 1 sets forth the Contractor's duties to operate in a manner consistent with the medical home approach. This section addresses the duties of individual network providers to furnish a medical home to such children in their practices through the written agreement between the Contractor and the provider. The Purchaser, while not a party to these written agreements, may specify minimum requirements for such agreements through the main purchasing agreement with Contractor. These requirements would ensure that the elements of the purchasing agreement that affect the medical home approach -- e.g., guidelines (§106), access standards (§205), and care coordination (§105) -- apply directly to the providers who serve as primary care providers for such children (whether these providers are primary care providers or pediatric specialists).

(a) In General — Consistent with §501(b) of Part 5 of MEDICAIDSPECS, Contractor shall enter into and maintain an enforceable written agreement with each provider participating in Contractor’s provider network that meets the requirements of subsection (b) and the requirements of §204(i) (relating to reimbursement).

(b) Written Agreements with Providers⁵⁰ — The enforceable written agreement between Contractor and a provider participating in Contractor's provider network shall:

(1) set forth the provider’s duties relating to:

(A) a medical home under subsection (c);

(B) the submission of accurate and complete data to Contractor as required under §208;

(C) other provisions under [drafter insert name of Purchasing Agreement]; and

(D) requirements under applicable federal and state law;

(2) requires performance of the duties specified in paragraph (1):

(A) as a condition of participation in Contractor’s provider network; and

(B) in consideration of payment by Contractor (consistent with §204(i)); and

(3) requires Contractor to supply, within [ ] days of the effective date of disenrollment of a child with special health care needs under §201(d) (relating to voluntary disenrollment) and §201(e) (relating to involuntary disenrollment), accurate and complete information to the provider regarding the disenrollment.

(c) Provider's Duty to Furnish a Medical Home — The duties of a provider participating in Contractor's provider network who functions as a primary care provider with respect to an enrolled child with special health care needs (as defined in §108(c)) are to:

(1) furnish items and services covered under §103(a) in a manner that ensures continuity of care consistent with:

(A) the guidelines specified in §106(a); and

(B) the access standards specified in §205;

(2) participate in the formulation, updating, and implementation of the child's care plan under §105 in order to monitor the growth and development of the child and furnish necessary items and services;

(3) coordinate the provision of primary care with the provision of specialty and other services to the child by:

(A) assuming the responsibilities of the child's care coordinator under §104(b)(2); or

(B) assisting the child's care coordinator in carrying out the responsibilities enumerated under §104(d); and

(4) maintain a medical record for the enrolled child that tracks the furnishing of primary care and specialized medical and health services to the child.

§205. Access Standards

Commentary: Many contracts between State Medicaid agencies and MCOs contain language relating to the accessibility of covered services. See CHRSP, Negotiating the New Health System, 3rd Edition (1999), Table 3.7, Volume 3, Part 2, pp. 3-358 - 3-441. For illustrative language on access standards for all populations by type of service (e.g., preventive, routine, and specialty services), see CHSRP, Optional Purchasing Specifications: Access to Services (June 2000), Part A-1. Both references can be found at www.gwu.edu/~chsrp.

The following illustrative language is specific to access by children with special health care needs to primary care providers and to pediatric specialists. It is designed to be incorporated into contractual access provisions of more general applicability.

(a) In General — Contractor shall comply with the requirements of Part 6 of MEDICAIDSPECS to the extent the requirements are consistent with this section.

Commentary: For a summary of primary care provider access standards (including capacity requirements) used by 6 states (Colorado, Connecticut, Delaware, Massachusetts, Michigan, and New Mexico), see Table 9, pp. 82-85, 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.

(b) Access to Primary Care Providers

(1) Travel Time in Urban Areas — In the case of an enrolled child with special health care needs (as defined in §108(c)) living in [drafter insert name of urban area(s) within Contractor’s service area], Contractor shall ensure that at least one⁵¹ primary care provider under §204(b) participating in Contractor’s provider network is located within [ ] minutes travel time (using ground transportation) of the child.

(2) Travel Time in Rural Areas — In the case of an enrolled child with special health care needs (as defined in §108(c)) living in [drafter insert name of rural area(s) within Contractor’s service area], Contractor shall ensure that at least one primary care provider under §204(b) participating in Contractor’s provider network is:

(A) located at a practice site within:

(i) [drafter insert travel time] of the child using ground transportation; or

(ii) if the child's family or caregiver certifies in writing to Contractor that the child is willing to travel for a period of time longer than that specified in clause (i), such longer period of time; or

(B) accessible via telemedicine.

(3) Service Waiting Times — Contractor shall ensure that an enrolled child with special health care needs (as defined in §108(c)) receives an appointment for items or services (other than emergency or urgent care services)⁵² covered under §103(a) appropriate to the child’s health care needs from a primary care provider participating in Contractor’s provider network within:

(A) [ ] days of request (by telephone or in person) in [drafter insert name of urban area(s) within Contractor’s service area]; and

(B) [ ] days of request (by telephone or in person) in [drafter insert name of rural area(s) within Contractor’s service area].

Commentary: A number of states have enacted legislation that impose standards on MCOs with respect to patient access to specialists. For a recent summary of these provisions, see Molly Stauffer, National Conference of State Legislatures, 2000 State by State Guide to Managed Care Law (September 1999), Table 2-4, and Families USA Foundation, Hit and Miss: State Managed Care Laws (July 1998), Table 1, www.familiesusa.org. Interested purchasers should consider the following illustrative language in light of any appropriate state law.

(1) In General — Contractor shall comply with the requirements of this subsection regarding access of enrolled children with special health care needs (as defined in §108(c)) to pediatric specialists (as defined in §108(j)).

(2) Standing Referrals to Pediatric Specialists for Specialty Care Services

(A) In Urban Areas — In the case of an enrolled child with special health care needs living in [drafter insert name of urban area(s) within Contractor’s service area], Contractor shall, consistent with §107(a)(5), provide for the direct access visits specified in the child’s care plan under §105(c), without prior authorization from the child’s primary care provider or Contractor, to pediatric specialists specified in the care plan, whether or not such specialists participate in Contractor’s provider network.

(B) In Rural Areas — In the case of an enrolled child with special health care needs living in [drafter insert name of rural area(s)- within Contractor’s service area], Contractor shall consistent with §107(a)(5), provide for the direct access visits (whether face-to-face or via telemedicine) specified in the child’s care plan under §105(c), without prior authorization from the child’s primary care provider or Contractor, to pediatric specialists specified in the care plan, whether or not such specialists participate in Contractor’s provider network.

(C) Service Waiting Times — Contractor shall ensure that the direct access visits described in subparagraphs (A) and (B) are scheduled to occur within [ ] days of request by an enrolled child with special health care needs or the child’s family or caregiver.

(3) Other Referrals to Pediatric Specialists for Specialty Care Services — In the case of a request for, or referral to, a pediatric specialist for an item or service (other than an emergency service or urgent care) covered under §103(a) that is not subject to a standing referral under paragraph (2), Contractor shall ensure that the encounter with the specialist is:

(A) in the case of a child with special health care needs living in [drafter insert name of urban area within Contractor’s service area], scheduled to occur within [ ] days of request by an enrolled child with special health care needs, the child’s family or caregiver, or the child’s primary care provider; and

(B) in the case of a child with special health care needs living in [drafter insert name of rural area within Contractor’s service area], scheduled to occur (whether face-to-face or via telemedicine) within [ ] days of request by an enrolled child with special health care needs, the child’s family or caregiver, or the child’s primary care provider.

§206. Relationships with Other State and Local Agencies⁵³

Commentary: This section sets forth illustrative language for memoranda of understanding between contracting MCOs and state agencies other than the purchaser that have responsibility for children with special health care needs. These are: state Title V CSHCN agencies, state substance abuse and mental health agencies, and state educational agencies. There are other state agencies that have responsibility for children with special health care needs, including state child welfare agencies and state developmental disabilities agencies. For illustrative language setting forth memoranda of understanding between contractor and these agencies, see §707 and §708, respectively, of Part 7 of MEDICAIDSPECS.

Note also that HCFA, in a letter to State Medicaid Directors dated November 25, 1998, observed that Medicaid agencies have an opportunity to “work with Ryan White grantees and managed care organizations to ensure a continuum of care for persons with HIV disease that avoids duplication of services and provides optimal service by qualified providers to beneficiaries.” See www.hcfa.gov/medicaid/smd-11258.htm.

For a summary of requirements for coordination agreements by MCOs with state agencies 6 states (Colorado, Connecticut, Delaware, Massachusetts, Michigan, and New Mexico), see Table 15, pp. 136-138, 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.

(a) In General — Contractor shall comply with the requirements of Part 7 of MEDICAIDSPECS, to the extent consistent with the requirements of this section.

(b) Relationship with State Title V Program for Children with Special Health Care Needs

Commentary: The following illustrative language addresses the relationship between contractor and the division within the State Title V agency that administers the CSHCN program. For illustrative language relating to the non-CSHCN Title V populations, see §703 of Part 7 of MEDICAIDSPECS. Some State Title V CSHCN Programs pay for or provide medical care directly to children with special health care needs; others furnish care coordination and referrals but do not pay for or provide medical care. The following illustrative language is designed to accommodate both types of arrangements.

(1) Referral of Disenrolled Children — In the case of an enrolled child with special health care needs (as defined in §108(c)) whose enrollment is terminated due to ineligibility for [drafter insert name of State Medicaid program], Purchaser⁵⁴ shall, at the time of disenrollment, notify:

(A) the child and the child’s family or caregiver in writing of the availability of medical, care coordination, or other services from:

(i) the [drafter insert name of State Title V CSHCN Program]; or

(ii) in the case of services not available directly from [drafter insert name of State Title V CSHCN Program], providers subcontracting with or funded by the [Title V CSHCN Program]; and

(B) the [Title V CSHCN Program] of the name, address, and phone number of the child.

Commentary: State Title V Agencies are required to report annually on their progress toward achieving the targets they set for 18 national Performance Measures and 6 Outcome Measures. Performance Measure #2 concerns the degree to which the State Title V CSHCN Program provides or pays for specialty and subspecialty services, including care coordination, not otherwise accessible or affordable to its clients. See www.mchdata.net. The illustrative language in subsection (c) is designed to enable interested Purchasers to ensure that their State Title V CSHCN Program receives the information it needs to assess its progress on Performance Measure #2 directly from the Contractor. In the alternative, Purchasers may wish to require that Contractors report the necessary information to them so that they can transfer it to the State Title V CSHCN Program. For illustrative language reflecting this alternative approach, see §208(c).

(2) Notification to Title V CSHCN Program Relating to Covered Items and Services and National Title V “Core” Performance Measures — Contractor shall notify the [drafter insert name of State Title V CSHCN Program] regarding Contractor’s duty, if any, under §103(a) to furnish, or arrange for the furnishing of, the following classes of services to enrolled children with special health care needs:

(A) medical and surgical subspecialty services;

(B) occupational therapy and physical therapy services;

(C) speech, hearing, and language services;

(D) respiratory services;

(E) durable medical equipment and supplies;

(F) home health care;

(G) nutrition services;

(H) care coordination; and

(I) early intervention services.

(3) Written Agreement for Care Coordination Services between Contractor and State Title V Program for Children with Special Health Care Needs — If Contractor elects to furnish care coordination services covered under §104(c) through [Title V CSHCN Program], Contractor shall enter into and maintain an enforceable written agreement with [Title V CSHCN Program] that sets forth the responsibilities of care coordinators under §104.

(4) Memorandum of Understanding with State Title V Program for Children with Special Health Care Needs

(A) In General — Contractor shall enter into a memorandum of understanding with [drafter insert name of State Title V Program for Children with Special Health Care Needs] if the Program is willing to enter into such a memorandum, which shall have the same term as [drafter insert name of purchasing document], and which shall address the matters enumerated in subparagraph (B).

(B) Elements of Memorandum of Understanding

(i) The responsibility of Contractor and the responsibility of the Program (or the Program’s grantees or subcontractors) for the furnishing of, and the payment for, items and services that:

(I) are covered under §103(a) with respect to enrolled children with special health care needs (as defined in §108(c)); and

(II) the Program routinely furnishes (or arranges through grantees or subcontractors for the furnishing of) to children with special health care needs;

(ii) The responsibility of Contractor and the responsibility of the Program (or the Program’s grantees or subcontractors) for the furnishing of, and the payment for, items and services that:

(I) are not covered under §103(b) with respect to enrolled children with special health care needs; and

(II) the Program routinely furnishes (or arranges through grantees or subcontractors for the furnishing of) to children with special health care needs;

(iii) The responsibility of Contractor (if any) and the responsibility of the Program (or the Program’s grantees or subcontractors) (if any) for payment for treatment of a member of the family of an enrolled child with special health care needs, or a caregiver of the child, who is not enrolled under [drafter insert name of Purchasing Agreement], but who requires treatment in order to effectively treat a condition or developmental disability or delay of the child;

(iv) The responsibility of the Program (or the Program’s grantees or subcontractors) for the identification of enrolled children with special health care needs to Purchaser (if any under §102(a)(2)), and the responsibility of Contractor to notify the Program of the identity of enrolled children determined to be children with special health care needs;

(v) The responsibility of Contractor and the responsibility of the Program (or the Program’s grantees or subcontractors) for arrangements for reciprocal referrals of enrolled children with special health care needs;

(vi) The responsibility of Contractor and the responsibility of the Program (or the Program's grantees or subcontractors) for making information regarding the arrangements under clauses (i) through (v) available to the families and caregivers of enrolled children with special health care needs;

(vii) The responsibility of Contractor and the responsibility of the Program (or the Program’s grantees or subcontractors) for the exchange of data and information relating to items and services furnished to enrolled children with special health care needs, subject to [drafter insert reference to applicable consent requirements under state law];

(viii) The responsibility of Contractor and the responsibility of the Program (or the Program’s grantees or subcontractors) for the designation of individuals responsible for coordinating the implementation of the memorandum; and

(ix) The manner in which disputes between Contractor and the Program regarding the terms of the memorandum will be resolved.

Commentary: The following illustrative language also appears in §709 of MEDICAIDSPECS.

(1) Referral of Disenrolled Children — In the case of an enrolled child with special health care needs (as defined in §108(c)) whose enrollment is terminated due to ineligibility, Purchaser shall,⁵⁵ at the time of disenrollment, notify:

(A) the child and the child’s family or caregiver in writing of the availability of services from:

(i) the [drafter insert name of State Mental Health and Substance Abuse Agency]; or

(ii) in the case of services not available directly from the [State Mental Health and Substance Abuse Agency], providers subcontracting with or funded by the [State Mental Health and Substance Abuse Agency]; and

(B) the [State Mental Health and Substance Abuse Agency] of the name, address, and phone number of the child.

(2) Memorandum of Understanding with State Mental Health and Substance Abuse Agency

(A) In General — Contractor shall enter into a memorandum of understanding with [drafter insert name of State Mental Health and Substance Abuse Agency] if the Agency is willing to enter into such a memorandum, which shall have the same term as [drafter insert name of purchasing document], and which shall address the matters enumerated in subparagraph (B).

(B) Elements of Memorandum of Understanding

(i) The responsibility of Contractor and the responsibility of the Agency (or the Agency’s grantees or subcontractors) for the furnishing of, and the payment for, items and services that:

(I) are covered under §103(a) with respect to enrolled children with special health care needs; and

(II) the Agency routinely furnishes (or arranges through grantees or subcontractors for the furnishing of) to children with special health care needs;

(ii) The responsibility of Contractor and the responsibility of the Agency (or the Agency’s grantees or subcontractors) for the furnishing of, and the payment for, items and services that:

(I) are not covered under §103(b) with respect to enrolled children with special health care needs; and

(II) the Agency routinely furnishes (or arranges through grantees or subcontractors for the furnishing of) to children with special health care needs;

(iii) The responsibility of Contractor and the responsibility of the Agency (or the Agency’s grantees or subcontractors) for payment for treatment of a member of the family of an enrolled child with special health care needs, or a caregiver of the child, who is not enrolled under [drafter insert name of Purchasing Agreement], but who requires treatment in order to effectively treat a condition or developmental disability or delay of the child;

(iv) The responsibility of the Agency (or the Agency’s grantees or subcontractors) for the identification of enrolled children with special health care needs to Purchaser (if any under §102(a)(2)), and the responsibility of Contractor to notify the Agency of the identity of enrolled children determined to be children with special health care needs;

(v) The responsibility of Contractor and the responsibility of the Agency (or the Agency’s grantees or subcontractors) for arrangements for reciprocal referrals of enrolled children with special health care needs;

(vi) The responsibility of Contractor and the responsibility of the Agency for making information regarding the arrangements under clauses (i) through (v) available to the families and caregivers of enrolled children with special health care needs;

(vii) The responsibility of Contractor and the responsibility of the Agency (or the Agency’s grantees or subcontractors) for the exchange of data and information relating to items and services furnished to enrolled children with special health care needs, subject to [drafter insert reference to applicable consent requirements under state law];

(viii) The responsibility of Contractor and the responsibility of the Agency (or the Agency’s grantees or subcontractors) for the designation of individuals responsible for coordinating the implementation of the memorandum; and

(ix) The manner in which disputes between Contractor and the Agency regarding the terms of the memorandum will be resolved.

(d) Relationship with State Education Agency and Part C Lead Agency

Commentary: The following illustrative language could be used to frame a memorandum of agreement between a Medicaid MCO and the State Educational Agency or Part C Lead Agency. Of course, Local Educational Agencies (LEAs) also play a role in the development and implementation of IEPs for children with disabilities. In some states, LEAs participate in the Medicaid program as providers and are reimbursed on a fee-for-service basis for the covered services they furnish to eligible children under IEPs. Because there could be numerous LEAs within the service area of a Medicaid MCO, particularly if it enrolls children throughout the state, and because not all of those LEAs may have significant numbers of Medicaid-eligible children with IEPs, the following language does not address agreements between MCOs and LEAs. Interested purchasers could, however, modify the following language to encourage memoranda of understanding between MCOs and one or more of the LEAs within their service areas. In addition, an MCO may choose to include an LEA as a provider in the MCO’s provider network; in this circumstance, the written provider agreement provisions under §204(h)(2) could apply. This illustrative language may also be found in §706 of MEDICAIDSPECS.

(1) Interagency Agreement — Contractor shall ensure that Contractor and each provider participating in Contractor’s provider network complies with:

(A) [drafter insert the requirements, if any, applicable to Purchaser under its interagency agreement with the State Educational Agency under Part B of the Individuals with Disabilities Education Act, 20 U.S.C. §1412(a)(12), 34 C.F.R. §300.142(b) and (e), relating to furnishing or paying for services]; and

(B) [drafter insert the requirements, if any, applicable to Purchaser under its interagency agreement with the State Lead Agency under Part C of the Individuals with Disabilities Education Act, 20 U.S.C. §1435(a)(10), relating to furnishing or paying for services].

(2) Memorandum of Understanding with State Education Agency or Part C Lead Agency

(A) In General — Contractor shall enter into a memorandum of understanding with [drafter insert name of State Educational Agency or Part C Lead Agency] if the Agency is willing to enter into such a memorandum, which shall have the same term as this [drafter insert name of purchasing document], and which shall address the matters enumerated in subparagraph (B).

(B) Elements of Memorandum of Understanding

(i) The responsibility of Contractor and the responsibility of the Agency (or the Agency’s grantees or subcontractors) for the furnishing of, and the payment for, items and services that:

(I) are covered under §103(a) with respect to enrolled children under IEPs (as defined in §108(f)) or under IFSPs (as defined in §108(g)); and

(II) the Agency routinely furnishes (or arranges through grantees or subcontractors for the furnishing of) to children under IEPs or IFSPs;

(ii) The responsibility of Contractor and the responsibility of the Agency (or the Agency’s grantees or subcontractors) for the furnishing of, and the payment for, items and services that:

(I) are not covered under §103(b) with respect to enrolled children under IEPs (as defined in §108(f)) or under IFSPs (as defined in §108(g)); and

(II) the Agency routinely furnishes (or arranges through grantees or subcontractors for the furnishing of) to children with IEPs or IFSPs;

(iii) The responsibility of Contractor, in the case of a coverage determination affecting an enrolled child with special health care needs for whom the Agency has responsibility, to:

(I) take into account the opinions of, and evidence supplied by, the Agency with respect to the determination §101A(b)(6) of MEDICAIDSPECS; and

(II) notify the Agency under §102A(c)(3) of MEDICAIDSPECS of the determination;

(iv) The responsibility of Contractor and the responsibility of the Agency (or the Agency’s grantees or subcontractors) for payment for treatment of a member of the family of an enrolled child under an IEP or IFSP, or a caregiver of the child, who is not enrolled under [drafter insert name of Purchasing Agreement], but who requires treatment in order to effectively treat a condition or developmental disability or delay of the child;

(v) The responsibility of the Agency (or the Agency’s grantees or subcontractors) for the identification of enrolled children with an IEP or IFSP to Purchaser under §102(a)(2), and the responsibility of Contractor to notify the Agency of the identity of enrolled children whom Contractor has determined may require an IEP or IFSP;

(vi) The responsibility of Contractor and the responsibility of the Agency (or the Agency’s grantees or subcontractors) for arrangements for reciprocal referrals of enrolled children with IEPs or IFSPs;

(vii) The responsibility of Contractor and the responsibility of the Agency for making information regarding the arrangements under clauses (i) through (vi) available to the families and caregivers of enrolled children with special health care needs;

(viii) The responsibility of Contractor and the responsibility of the Agency (or the Agency’s grantees or subcontractors) for the exchange of data and information relating to items and services furnished to enrolled children with IEPs or IFSPs consistent with the confidentiality requirements in §209(e);

(ix) The responsibility of Contractor and the responsibility of the Agency (or the Agency’s grantees or subcontractors) for the designation of individuals responsible for coordinating the implementation of the memorandum; and

(x) The manner in which disputes between Contractor and the Agency regarding the terms of the memorandum will be resolved.

§207. Quality Measurement and Improvement⁵⁶

Commentary: The following illustrative language assumes that the costs to Contractors of conducting quality measurement and improvement activities, including the clinical focus studies specified by Purchaser, will be factored into the capitation rate paid by Purchaser to Contractor on behalf of each enrolled child with special health care needs. For a summary of performance measures used by 6 states (Colorado, Connecticut, Delaware, Massachusetts, Michigan, and New Mexico), see Table 11, pp. 105-108 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.

(a) In General⁵⁷ — Contractor shall comply with the requirements of Part 8⁵⁸ of MEDICAIDSPECS to the extent consistent with the requirements of this section.

(b) Clinical Focus Studies — Contractor shall, on a [ ] basis, conduct, or arrange for the conduct of, the following focus studies relating to the furnishing of clinical services under §103(a) to children with special health care needs (as defined §108(c)):

(1) the extent to which providers participating in Contractor’s provider network are applying the child health supervision guidelines enumerated in §106 in treating enrolled children with special health care needs;

(2) the implementation of care plans developed under §105;

(3) the provision of items and services for the treatment of [drafter specify chronic childhood conditions that reflect Purchaser’s research priorities]; and

(4) [drafter insert other focus study topics reflecting research priorities of other state agencies].

(c) Other Focus Studies — Contractor shall, on a [ ] basis, conduct, or arrange for the conduct of, the following focus studies relating to the availability and accessibility of services under §103(a) to children with special health care needs (as defined §108(c)):

(1) the extent to which the standards relating to access to primary care providers and pediatric specialists specified in §205 are met;

(2) the providers participating in Contractor’s provider network from whom enrolled children with special health care needs most frequently receive covered services;

(3) the provision of care coordination services under §104(d) for enrolled children with special health care needs;

(4) the rate at which enrolled children with special health care needs are involuntarily disenrolled from Contractor under §201(e);

(5) the level of satisfaction of families or caregivers of enrolled children with special health care needs, as measured by [ ]⁵⁹, with the accessibility and quality of the services covered under [drafter insert name of purchasing document]; and

(6) [drafter insert other study topics reflecting research priorities of other state agencies].

§208. Data Collection and Reporting⁶⁰

(a) In General — Contractor shall comply with:

(1) the requirements of §907 of MEDICAIDSPECS (relating to encounter data) and the remainder of Part 9⁶¹ of MEDICAIDSPECS; and

(2) the requirements of subsections (b) and (c), but only to the extent Contractor does not meet such requirements through the data collected and reported under paragraph (1).

Commentary: The following illustrative language assumes Contractor is collecting and reporting encounter data, as articulated in §907 of MEDICAIDSPECS. A recent GAO analysis reaffirmed that encounter data regarding patients with disabilities "is essential for effective monitoring. The information can play an important role in quality assurance, estimates of future service use, research, and program planning. Developing comprehensive, consistent data on services provided under capitated managed care takes time and effort, and can be expensive. However, it can permit states to identify areas in which service utilization rates are overly low or high." General Accounting Office, Medicaid Managed Care: Challenges In Implementing Safeguards for Children with Special Needs (March 2000) GAO/HEHS-00-37, p. 31, www.gao.gov. Of course, the precise definition of encounter data tends to vary from state to state. One purpose of the following language is to provide a checklist of data elements relating to children with special health care needs from which purchasers may wish to draw in designing their general requirements relating to encounter data collection and reporting. Another option for purchasers would be to supplement their general encounter data collection by requiring contractors to report data specific to children with special health care needs that the state is not already collecting. The following illustrative language would accommodate both approaches to avoiding duplication of data requirements.

(b) Data Specific to Children with Special Health Care Needs⁶² — Contractor shall collect and report to Purchaser, on a [ ] basis, in such form and manner as Purchaser specifies, the following data (to the extent that such data are not required under the encounter data provisions of §907 of MEDICAIDSPECS):

(1) the number of enrolled children identified to or by Contractor as children with special health care needs (as defined in §108(c)), broken down by:

(A) age;

(B) gender;

(C) race or ethnicity;

(D) receipt of Supplemental Security Income (SSI) benefits;

(E) diagnostic category; and

(F) enrollment in [drafter insert name of State Title V CSHCN Program];

(2) the number of enrolled children identified to or by Contractor as children who are in foster care;

(3) the number of enrolled children who receive early intervention services under an IFSP (as defined in §108(g));

(4) the number of enrolled children who receive health or related services under an IEP (as defined in §108(f));

(5) the number and percentage of families or caregivers of enrolled children with special health care needs who are dissatisfied with the accessibility or quality of the services specified in the child’s care plan under §105, grouped by zip code of residence within Contractor’s service area;

(6) the number of enrolled children with special health care needs who disenroll due to:

(A) inability to select a primary care provider under §203(b);

(B) inability to access to pediatric specialist under §203(c); and

(C) dissatisfaction with the accessibility or quality of the services specified in the child’s care plan under §105;

(7) the results of:

(A) the clinical studies under §207(b); and

(B) the other studies under §207(c);

(8) the number and types of emergency services (as defined under §1401(l) of MEDICAIDSPECS) furnished to enrolled children with special health care needs during the [ ] period; and

(9) the number of each of the following types of adverse incidents not reported under paragraph (8) (relating to emergency services) involving children with special health care needs during the [ ] period, including:

(A) suicide or attempted suicide;

(B) adverse drug reaction (including drug overdose);

(C) alcohol poisoning;

(D) child abuse; and

(E) [drafter insert other types of adverse incidents appropriate to enrolled CSHCN subpopulations, such as children with behavioral health needs (e.g., erroneous prescription of psychotropic medication)].

Commentary: State Title V Agencies report annually on their progress toward achieving the targets they set for 18 national Performance Measures and 6 national Outcome Measures with respect to the children with special health care needs for whom they have responsibility. See www.mchdata.net. One approach to collecting this information is reflected in §206(b)(2), under which Contractors would report this data directly to the State Title V CSHCN Program. The illustrative language below embodies an alternative approach under which the Contractor reports to the Purchaser the data that the State Title V CSHCN Program requires in order to prepare its progress reports. The illustrative language would require that the data be supplied to Purchaser because the Title V CSHCN Agency is not a party to the purchasing agreement; however, Purchasers may establish arrangements for transfer of this data to the Title V CSHCN Agency under the interagency agreement under §1902(a)(11)(B) of the Social Security Act, 42 U.S.C. §1396a(a)(11)(B).

(c) Data Relating to National Title V Performance and Outcome Measures — Contractor shall collect and report to Purchaser, on a [ ] basis, in such form and manner as Purchaser specifies, the data required by the [Title V CSHCN Agency] to report on its progress in achieving the State targets for performance and outcomes under Title V of the Social Security Act, 42 U.S.C. §701 et seq.

§209. Enrolled Child Safeguards ⁶³

(a) In General — Contractor shall comply with the requirements of:

(1) Part 10 of MEDICAIDSPECS to the extent consistent with the requirements of this section;

(2) Americans with Disabilities Act, 42 U.S.C. §12101 et seq. 28 C.F.R. Part 35 and 36;⁶⁴

(3) §504 of the Rehabilitation Act of 1973, 29 U.S.C. §794, 45 C.F.R. Part 85; and

(4) Title VI of the Civil Rights Act of 1964, 42 U.S.C. §2000d, 45 C.F.R. §80.1 et seq.

(b) Unnecessary Inquiries — Consistent with §009(d) of MEDICAIDSPECS, Contractor shall ensure that any communication with an enrolled child with special health care needs (as defined in §108(c)) does not make unnecessary inquiries into the existence of a disability in violation of the Americans with Disabilities Act, 42 U.S.C. §12101 et seq.⁶⁵

(c) Due Process — Contractor shall comply with the requirements of §1902(a)(3) of the Social Security Act, 42 U.S.C. §1396a(a)(3), and implementing regulations at 42 C.F.R. §§431.200 et seq., relating to notice, fair hearing, and continuation of coverage rights of an enrolled child with special health care needs (as defined in §108(c)) in the event of:

(1) a denial, termination, or reduction of an item or service covered under §103(a); or

(2) the failure to furnish an item or service covered under §103(a) with reasonable promptness.

(d) Confidentiality Protections for Enrolled Adolescents — Contractor shall comply with §1002 of Part 10 of MEDICAIDSPECS.

(e) Other Safeguards for Children with Special Health Care Needs — Contractor shall comply with:

(1) the requirements of 34 C.F.R. Part 99.31 implementing the Family Educational Rights and Privacy Act (FERPA), 20 U.S.C. §1232(g); and

(2) the confidentiality protections in the Individuals with Disabilities Education Act with respect to an:

(A) IEP at 20 U.S.C. §1417(c), 34 C.F.R. §§300.560 – 300.577; and

(B) IFSP at 20 U.S.C. §1439(a)(2), 34 C.F.R. §§303.400 – 303.425

§210. Remedies for Noncompliance

(a) In General — Contractor shall comply with the requirements of Part 12 of MEDICAIDSPECS.

(b) Enrolled Children as Intended Third Party Beneficiaries — Contractor agrees and affirms that an enrolled child with special health care needs (as defined in §108(c)) is an intended third-party beneficiary to [drafter insert name of purchasing document], and that such child, and the child’s family or caregiver on the child’s behalf, is entitled to all of the rights and remedies available to third party beneficiaries under state or other law.⁶⁶

§211. Other Applicable Federal and State Requirements — Contractor shall comply with the requirements of Part 13 of MEDICAIDSPECS.

Endnotes

HCFA’s "Draft Interim Review Criteria for Children with Special Needs" (June 4, 1999) provides: “If an MCO/PHP requests to disenroll or transfer enrollment of an enrollee to another plan, the reasons for reassignment are not discriminatory in any way – including adverse change in an enrollee’s health status and non-compliance behavior