42 USC 1396 - State option to provide coordinated care through a health home for children with medically complex conditions

View all text of Subchapter XIX [§ 1396 - § 1396w-8]

§ 1396w–4a. State option to provide coordinated care through a health home for children with medically complex conditions

(a) In general

(b) Health home qualification standardsThe Secretary shall establish standards for qualification as a health home for purposes of this section. Such standards shall include requiring designated providers, teams of health care professionals operating with such providers, and health teams to demonstrate to the State the ability to do the following:

(1) Coordinate prompt care for children with medically complex conditions, including access to pediatric emergency services at all times.

(2) Develop an individualized comprehensive pediatric family-centered care plan for children with medically complex conditions that accommodates patient preferences.

(3) Work in a culturally and linguistically appropriate manner with the family of a child with medically complex conditions to develop and incorporate into such child’s care plan, in a manner consistent with the needs of the child and the choices of the child’s family, ongoing home care, community-based pediatric primary care, pediatric inpatient care, social support services, and local hospital pediatric emergency care.

(4) Coordinate access to—

(A) subspecialized pediatric services and programs for children with medically complex conditions, including the most intensive diagnostic, treatment, and critical care levels as medically necessary; and

(B) palliative services if the State provides such services under the State plan (or a waiver of such plan).

(5) Coordinate care for children with medically complex conditions with out-of-State providers furnishing care to such children to the maximum extent practicable for the families of such children and where medically necessary, in accordance with guidance issued under subsection (e)(1) and section 431.52 of title 42, Code of Federal Regulations.

(6) Collect and report information under subsection (g)(1).

(1) In general

(2) Methodology

(A) In generalThe State shall specify in the State plan amendment the methodology the State will use for determining payment for the provision of health home services. Such methodology for determining payment—

(i) may be tiered to reflect, with respect to each child with medically complex conditions provided such services by a designated provider, a team of health care professionals operating with such a provider, or a health team, the severity or number of each such child’s chronic conditions, life-threatening illnesses, disabilities, or rare diseases, or the specific capabilities of the provider, team of health care professionals, or health team; and

(ii) shall be established consistent with section 1396a(a)(30)(A) of this title.

(B) Alternate models of payment

(3) Planning grants

(A) In general

(B) State contribution

(d) Coordinating care

(1) Hospital notification

(2) Education with respect to availability of health home services

(3) Family education

(4) Mental health coordination

(e) Guidance on coordinating care from out-of-State providers

(1) In generalNot later than October 1, 2020, the Secretary shall issue (and update as the Secretary determines necessary) guidance to State Medicaid directors on—

(A) best practices for using out-of-State providers to provide care to children with medically complex conditions;

(B) coordinating care for such children provided by such out-of-State providers (including when provided in emergency and non-emergency situations);

(D) processes for screening and enrolling such providers in the respective State plan (or a waiver of such plan), including efforts to streamline such processes or reduce the burden of such processes on such providers.

(2) Stakeholder input

(f) MonitoringA State shall include in the State plan amendment—

(1) a methodology for tracking reductions in inpatient days and reductions in the total cost of care resulting from improved care coordination and management under this section;

(2) a proposal for use of health information technology in providing health home services under this section and improving service delivery and coordination across the care continuum (including the use of wireless patient technology to improve coordination and management of care and patient adherence to recommendations made by their provider); and

(3) a methodology for tracking prompt and timely access to medically necessary care for children with medically complex conditions from out-of-State providers.

(g) Data collection

(1) Provider reporting requirementsIn order to receive payments from a State under subsection (c), a designated provider, a team of health care professionals operating with such a provider, or a health team shall report to the State, at such time and in such form and manner as may be required by the State, the following information:

(A) With respect to each such provider, team of health care professionals, or health team, the name, National Provider Identification number, address, and specific health care services offered to be provided to children with medically complex conditions who have selected such provider, team of health care professionals, or health team as the health home of such children.

(B) Information on all applicable measures for determining the quality of health home services provided by such provider, team of health care professionals, or health team, including, to the extent applicable, child health quality measures and measures for centers of excellence for children with complex needs developed under this subchapter, subchapter XXI, and section 1320b–9a of this title.

When appropriate and feasible, such provider, team of health care professionals, or health team, as the case may be, shall use health information technology in providing the State with such information.

(2) State reporting requirements

(A) Comprehensive reportA State with a State plan amendment approved under this section shall report to the Secretary (and, upon request, to the Medicaid and CHIP Payment and Access Commission), at such time and in such form and manner determined by the Secretary to be reasonable and minimally burdensome, the following information:

(i) Information reported under paragraph (1).

(ii) The number of children with medically complex conditions who have selected a health home pursuant to this section.

(iii) The nature, number, and prevalence of chronic conditions, life-threatening illnesses, disabilities, or rare diseases that such children have.

(iv) The type of delivery systems and payment models used to provide services to such children under this section.

(v) The number and characteristics of designated providers, teams of health care professionals operating with such providers, and health teams selected as health homes pursuant to this section, including the number and characteristics of out-of-State providers, teams of health care professionals operating with such providers, and health teams who have provided health care items and services to such children.

(vi) The extent to which such children receive health care items and services under the State plan.

(vii) Quality measures developed specifically with respect to health care items and services provided to children with medically complex conditions.

(B) Report on best practices

(h) Rule of constructionNothing in this section may be construed—

(1) to require a child with medically complex conditions to enroll in a health home under this section;

(2) to limit the choice of a child with medically complex conditions in selecting a designated provider, team of health care professionals operating with such a provider, or health team that meets the health home qualification standards established under subsection (b) as the child’s health home; or

(3) to reduce or otherwise modify—

(A) the entitlement of children with medically complex conditions to early and periodic screening, diagnostic, and treatment services (as defined in section 1396d(r) of this title); or

(B) the informing, providing, arranging, and reporting requirements of a State under section 1396a(a)(43) of this title.

(i) DefinitionsIn this section:

(1) Child with medically complex conditions

(A) In generalSubject to subparagraph (B), the term “child with medically complex conditions” means an individual under 21 years of age who—

(i) is eligible for medical assistance under the State plan (or under a waiver of such plan); and

(ii) has at least—(I) one or more chronic conditions that cumulatively affect three or more organ systems and severely reduces cognitive or physical functioning (such as the ability to eat, drink, or breathe independently) and that also requires the use of medication, durable medical equipment, therapy, surgery, or other treatments; or(II) one life-limiting illness or rare pediatric disease (as defined in section 360ff(a)(3) of title 21).

(B) Rule of construction

(2) Chronic conditionThe term “chronic condition” means a serious, long-term physical, mental, or developmental disability or disease, including the following:

(A) Cerebral palsy.

(B) Cystic fibrosis.

(D) Blood diseases, such as anemia or sickle cell disease.

(E) Muscular dystrophy.

(F) Spina bifida.

(G) Epilepsy.

(H) Severe autism spectrum disorder.

(I) Serious emotional disturbance or serious mental health illness.

(3) Health home

(4) Health home services

(A) In general

(B) Services describedThe services described in this subparagraph shall include—

(i) comprehensive care management;

(ii) care coordination, health promotion, and providing access to the full range of pediatric specialty and subspecialty medical services, including services from out-of-State providers, as medically necessary;

(iii) comprehensive transitional care, including appropriate follow-up, from inpatient to other settings;

(iv) patient and family support (including authorized representatives);

(v) referrals to community and social support services, if relevant; and

(vi) use of health information technology to link services, as feasible and appropriate.

(5) Designated provider

(6) Team of health care professionalsThe term “team of health care professionals” means a team of health care professionals (as described in the State plan amendment under this section) that may—

(A) include—

(i) physicians and other professionals, such as pediatricians or pediatric specialty or subspecialty providers, nurse care coordinators, dietitians, nutritionists, social workers, behavioral health professionals, physical therapists, occupational therapists, speech pathologists, nurses, individuals with experience in medical supportive technologies, or any professionals determined to be appropriate by the State and approved by the Secretary;

(ii) an entity or individual who is designated to coordinate such a team; and

(iii) community health workers, translators, and other individuals with culturally-appropriate expertise; and

(B) be freestanding, virtual, or based at a children’s hospital, hospital, community health center, community mental health center, rural clinic, clinical practice or clinical group practice, academic health center, or any entity determined to be appropriate by the State and approved by the Secretary.

(7) Health team

(Aug. 14, 1935, ch. 531, title XIX, § 1945A, as added Pub. L. 116–16, § 3, Apr. 18, 2019, 133 Stat. 853.)