Existing law establishes the Medi-Cal program, which is administered by the State Department of Health Care Services and under which qualified low-income individuals receive health care services. The Medi-Cal program is, in part, governed and funded by federal Medicaid program provisions.

Existing law requires the department to develop a pediatric palliative care benefit as a pilot program to Medi-Cal beneficiaries under 21 years of age, to be implemented only to the extent that any necessary federal approvals are obtained and federal financial participation is available. Existing law requires that program to include, among other things, hospice services to individuals whose conditions may result in death, regardless of the estimated length of the individuals remaining period of life.

Pursuant to the above-described provisions, the department established the Pediatric Palliative Care (PPC) Waiver in 2009, upon receiving federal approval in December 2008. After the waiver ended on December 31, 2018, the department implemented a plan in 2019 to transition some pediatric palliative care services to the Early and Periodic, Screening, Diagnostic, and Treatment (EPSDT) benefit, which is available to Medi-Cal beneficiaries under 21 years of age, as specified.

This bill, Sophias Act, would authorize extended eligibility for pediatric hospice services and palliative care services for those individuals who have been determined eligible for those services prior to 21 years of age to after 21 years of age, as specified. To the extent that these provisions would alter the eligibility of individuals for these services, the bill would create a state-mandated local program. The bill would require the department to seek any federal approvals it deems necessary to implement these provisions. The bill would implement these provisions only to the extent that necessary federal approvals are obtained and federal financial participation is available and not otherwise jeopardized.

This bill would state the Legislatures intent to investigate future legislation to make pediatric palliative and hospice care more accessible to families.

The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement.

This bill would provide that, if the Commission on State Mandates determines that the bill contains costs mandated by the state, reimbursement for those costs shall be made pursuant to the statutory provisions noted above.

Existing law establishes the Medi-Cal program, which is administered by the State Department of Health Care Services and under which qualified low-income individuals receive health care services. The Medi-Cal program is, in part, governed and funded by federal Medicaid program provisions.

Existing law requires the department to develop a pediatric palliative care benefit as a pilot program to Medi-Cal beneficiaries under 21 years of age, to be implemented only to the extent that any necessary federal approvals are obtained and federal financial participation is available. Existing law requires that program to include, among other things, hospice services to individuals whose conditions may result in death, regardless of the estimated length of the individuals remaining period of life.

Pursuant to the above-described provisions, the department established the Pediatric Palliative Care (PPC) Waiver in 2009, upon receiving federal approval in December 2008. After the waiver ended on December 31, 2018, the department implemented a plan in 2019 to transition some pediatric palliative care services to the Early and Periodic, Screening, Diagnostic, and Treatment (EPSDT) benefit, which is available to Medi-Cal beneficiaries under 21 years of age, as specified.

This bill, Sophias Act, would authorize extended eligibility for pediatric hospice services and palliative care services for those individuals who have been determined eligible for those services prior to 21 years of age to after 21 years of age, as specified. To the extent that these provisions would alter the eligibility of individuals for these services, the bill would create a state-mandated local program. The bill would require the department to seek any federal approvals it deems necessary to implement these provisions. The bill would implement these provisions only to the extent that necessary federal approvals are obtained and federal financial participation is available and not otherwise jeopardized.

This bill would state the Legislatures intent to investigate future legislation to make pediatric palliative and hospice care more accessible to families.

The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement.

This bill would provide that, if the Commission on State Mandates determines that the bill contains costs mandated by the state, reimbursement for those costs shall be made pursuant to the statutory provisions noted above.

Existing law establishes the Medi-Cal program, which is administered by the State Department of Health Care Services and under which qualified low-income individuals receive health care services. The Medi-Cal program is, in part, governed and funded by federal Medicaid program provisions.

Existing law requires the department to develop a pediatric palliative care benefit as a pilot program to Medi-Cal beneficiaries under 21 years of age, to be implemented only to the extent that any necessary federal approvals are obtained and federal financial participation is available. Existing law requires that program to include, among other things, hospice services to individuals whose conditions may result in death, regardless of the estimated length of the individuals remaining period of life.

Pursuant to the above-described provisions, the department established the Pediatric Palliative Care (PPC) Waiver in 2009, upon receiving federal approval in December 2008. After the waiver ended on December 31, 2018, the department implemented a plan in 2019 to transition some pediatric palliative care services to the Early and Periodic, Screening, Diagnostic, and Treatment (EPSDT) benefit, which is available to Medi-Cal beneficiaries under 21 years of age, as specified.

This bill, Sophias Act, would extend authorize extended eligibility for pediatric hospice services and palliative care services for those individuals who have been determined eligible for those services prior to 21 years of age, until 26 years of age and would extend eligibility for hospice services age to after 21 years of age. age, as specified. To the extent that these provisions would alter the eligibility of individuals for these services, the bill would create a state-mandated local program. The bill would require the department to seek any federal approvals it deems necessary to implement these provisions. The bill would implement these provisions only to the extent that necessary federal approvals are obtained and federal financial participation is available and not otherwise jeopardized.

This bill would state the Legislatures intent to investigate future legislation to make pediatric palliative and hospice care more accessible to families.

The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement.

This bill would provide that, if the Commission on State Mandates determines that the bill contains costs mandated by the state, reimbursement for those costs shall be made pursuant to the statutory provisions noted above.

Existing law establishes the Medi-Cal program, which is administered by the State Department of Health Care Services and under which qualified low-income individuals receive health care services. The Medi-Cal program is, in part, governed and funded by federal Medicaid program provisions.

Existing law requires the department to develop a pediatric palliative care benefit as a pilot program to Medi-Cal beneficiaries under 21 years of age, to be implemented only to the extent that any necessary federal approvals are obtained and federal financial participation is available. Existing law requires that program to include, among other things, hospice services to individuals whose conditions may result in death, regardless of the estimated length of the individuals remaining period of life.

Pursuant to the above-described provisions, the department established the Pediatric Palliative Care (PPC) Waiver in 2009, upon receiving federal approval in December 2008. After the waiver ended on December 31, 2018, the department implemented a plan in 2019 to transition some pediatric palliative care services to the Early and Periodic, Screening, Diagnostic, and Treatment (EPSDT) benefit, which is available to Medi-Cal beneficiaries under 21 years of age, as specified.

This bill, Sophias Act, would extend eligibility for pediatric palliative care services for those individuals who have been determined eligible for those services prior to 21 years of age, until 26 years of age and would extend eligibility for hospice services after 21 years of age. To the extent that these provisions would alter the eligibility of individuals for these services, the bill would create a state-mandated local program. The bill would implement these provisions only to the extent that necessary federal approvals are obtained and federal financial participation is not otherwise jeopardized.

This bill would state the Legislatures intent to investigate future legislation to make pediatric palliative and hospice care more accessible to families.

The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement.

This bill would provide that, if the Commission on State Mandates determines that the bill contains costs mandated by the state, reimbursement for those costs shall be made pursuant to the statutory provisions noted above.

Existing law establishes the Medi-Cal program, which is administered by the State Department of Health Care Services and under which qualified low-income individuals receive health care services. The Medi-Cal program is, in part, governed and funded by federal Medicaid program provisions.

Existing law requires the department to develop a pediatric palliative care benefit as a pilot program to Medi-Cal beneficiaries under 21 years of age, to be implemented only to the extent that any necessary federal approvals are obtained and federal financial participation is available. Existing law requires that program to include, among other things, hospice services to individuals whose conditions may result in death, regardless of the estimated length of the individuals remaining period of life.

Pursuant to the above-described provisions, the department established the Pediatric Palliative Care (PPC) Waiver in 2009, upon receiving federal approval in December 2008. After the waiver ended on December 31, 2018, the department implemented a plan in 2019 to transition some pediatric palliative care services to the Early and Periodic, Screening, Diagnostic, and Treatment (EPSDT) benefit, which is available to Medi-Cal beneficiaries under 21 years of age, as specified.

This bill bill, Sophias Act, would extend eligibility for pediatric palliative care services for those individuals who have been determined eligible for those services prior to 21 years of age, until 26 years of age and would extend eligibility for hospice services after 21 years of age. To the extent that these provisions would alter the eligibility of individuals for these services, the bill would create a state-mandated local program. The bill would implement these provisions only to the extent that necessary federal approvals are obtained and federal financial participation is not otherwise jeopardized.

The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement.

This bill would provide that, if the Commission on State Mandates determines that the bill contains costs mandated by the state, reimbursement for those costs shall be made pursuant to the statutory provisions noted above.

Existing law establishes the Medi-Cal program, which is administered by the State Department of Health Care Services and under which qualified low-income individuals receive health care services. The Medi-Cal program is, in part, governed and funded by federal Medicaid program provisions.

Existing law requires the department to develop a pediatric palliative care benefit as a pilot program to Medi-Cal beneficiaries under 21 years of age, to be implemented only to the extent that any necessary federal approvals are obtained and federal financial participation is available. Existing law requires that program to include, among other things, hospice services to individuals whose conditions may result in death, regardless of the estimated length of the individuals remaining period of life.

Pursuant to the above-described provisions, the department established the Pediatric Palliative Care (PPC) Waiver in 2009, upon receiving federal approval in December 2008. After the waiver ended on December 31, 2018, the department implemented a plan in 2019 to transition some pediatric palliative care services to the Early and Periodic, Screening, Diagnostic, and Treatment (EPSDT) benefit, which is available to Medi-Cal beneficiaries under 21 years of age, as specified.

This bill would extend eligibility for pediatric palliative care services and concurrent treatment for an underlying illness for those individuals who have been determined eligible for those services prior to 21 years of age, after 21 years of age. until 26 years of age and would extend eligibility for hospice services after 21 years of age. To the extent that these provisions would alter the eligibility of individuals for these services, the bill would create a state-mandated local program. The bill would require a managed care plan to be liable for payment of these services received in a county different from the individuals county of residence if they are not available in that county. The bill would implement these provisions only to the extent that necessary federal approvals are obtained and federal financial participation is not otherwise jeopardized.

The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement.

This bill would provide that, if the Commission on State Mandates determines that the bill contains costs mandated by the state, reimbursement for those costs shall be made pursuant to the statutory provisions noted above.

Existing law establishes the Medi-Cal program, which is administered by the State Department of Health Care Services and under which qualified low-income individuals receive health care services. The Medi-Cal program is, in part, governed and funded by federal Medicaid program provisions.

Existing law requires the department to develop a pediatric palliative care benefit as a pilot program to Medi-Cal beneficiaries under 21 years of age, to be implemented only to the extent that any necessary federal approvals are obtained and federal financial participation is available. Existing law requires that program to include, among other things, hospice services to individuals whose conditions may result in death, regardless of the estimated length of the individuals remaining period of life.

Pursuant to the above-described provisions, the department established the Pediatric Palliative Care (PPC) Waiver in 2009, upon receiving federal approval in December 2008. After the waiver ended on December 31, 2018, the department implemented a plan in 2019 to transition some pediatric palliative care services to the Early and Periodic, Screening, Diagnostic, and Treatment (EPSDT) benefit, which is available to Medi-Cal beneficiaries under 21 years of age, as specified.

Existing law establishes the Medi-Cal program, which is administered by the State Department of Health Care Services and under which qualified low-income individuals receive health care services. The Medi-Cal program is, in part, governed and funded by federal Medicaid program provisions.

Existing law requires the department to develop a pediatric palliative care benefit as a pilot program to Medi-Cal beneficiaries under 21 years of age, to be implemented only to the extent that any necessary federal approvals are obtained and federal financial participation is available. Existing law requires that program to include, among other things, hospice services to individuals whose conditions may result in death, regardless of the estimated length of the individuals remaining period of life.

Pursuant to the above-described provisions, the department established the Pediatric Palliative Care (PPC) Waiver in 2009, upon receiving federal approval in December 2008. After the waiver ended on December 31, 2018, the department implemented a plan in 2019 to transition some pediatric palliative care services to the Early and Periodic, Screening, Diagnostic, and Treatment (EPSDT) benefit, which is available to Medi-Cal beneficiaries under 21 years of age, as specified.

This bill would state the intent of the Legislature to enact legislation that would enhance the scope of pediatric palliative care services that have been transitioned from the PPC Waiver, to the EPSDT benefit, under the Medi-Cal program.

CONCURRENCE IN SENATE AMENDMENTS

CSA1 Bill Id:AB 847

Author:(Luz Rivas)

As Amended Ver:September 8, 2023

Majority vote

SUMMARY

Allows an individual determined eligible for hospice services or palliative care in the Medi-Cal program, prior to 21 years of age, to continue to receive such services after 21 years of age if determined eligible by a health care provider, as specified.

Senate Amendments

1. Add intent to investigate future legislation to make pediatric palliative and hospice care more accessible to families, as specified.
2. Recast provisions related to retaining eligibility for palliative care or hospice services, with similar effect as the prior language, and allow an individual to continue to retain services past 26 years of age as long as certified eligible by a health care provider.

COMMENTS

1. Palliative Care. According to the Center to Advance Palliative Care, palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially trained team of doctors, nurses and other specialists who work together with a patient's other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment. As a Medi-Cal benefit, palliative care includes, but is not limited to, advance care planning, palliative care assessment and consultation, pain and symptom management, plan of care, care coordination, nursing and psychosocial services, discharge planning, physical or occupational therapy, and palliative care team services.
2. Pediatric Palliative Care. The American Academy of Pediatrics recommended in 2000 that pediatric palliative care begin on the diagnosis of a child's life-threatening condition and continue for the duration of the disease, alongside curative care or life-saving treatment.

AB 1745 (Chan), Chapter 330, Statutes of 2006, created the Pediatric Palliative Care pilot program. The pilot was implemented through a "1915(c)" waiver option (pursuant to 1915(c) of the Federal Social Security Act), which allows states to explore provision of long-term care services in home- and community-based settings. The Pediatric Palliative Care waiver, which was originally approved by the Centers for Medicare & Medicaid Services in 2008, ended on December 31, 2018. To ensure continuity services for recipients who transitioned from the waiver, palliative care services were transitioned to the fee-for-service Medi-Cal system or the enrollee's Medi-Cal managed care plan, as applicable, as of January 1, 2019.

1. Early and Periodic Screening, Diagnostic and Treatment (EPSDT). Pediatric palliative care services are covered under the EPSDT Medi-Cal benefit. EPSDT services are existing Medi-Cal benefits that provide comprehensive, preventive, diagnostic and treatment services to eligible participants under the age of 21, as required by federal law. Under the EPSDT benefit, states are required to provide any Medicaid-covered service listed within the categories of mandatory and optional services in the federal law, even services that are not designated as covered benefits by a state Medicaid program. Medi-Cal enrollees under 21 are eligible for EPSDT services when the services are determined to be medically necessary "to correct or ameliorate defects and physical and mental illnesses or conditions," which creates a broad entitlement to services. In the context of the pediatric palliative care, this means the state offers more generous eligibility criteria to children under 21. Under federal requirements, a Medi-Cal enrollee under 21 may be eligible for palliative care and hospice services concurrently with curative care.
2. Hospice. Hospice care is a Medi-Cal benefit that serves terminally ill members. It consists of interventions that focus primarily on pain and symptom management rather than a cure or the prolongation of life. To qualify for hospice care, a Medi-Cal member must have a life expectancy of six months or less.
3. Medi-Cal Palliative Care Benefit. The Medi-Cal palliative care benefit is offered in both managed care and FFS delivery systems.
   1. Services. Medi-Cal makes no age distinction between the service codes billable as part of the palliative care benefit for children versus those billable for adults. Medi-Cal billing policy lists the covered services and requires different modifiers to be used to differentiate billing for palliative care for an adult versus for a child.
   2. Eligibility. The Department of Health Care Services, which administers the Medi-Cal program, establishes general eligibility criteria for palliative care that apply to all enrollees, but also notes children under 21 who do not meet the general eligibility criteria may become eligible for palliative care services according to a more expansive criteria, consistent with the provision of EPSDT services.

The general criteria makes eligible someone with an advanced illness whose health is in decline, who has started to rely on the hospital or emergency department to manage their condition, whose death within a year would not be unexpected based on clinical status, and who meets specified clinical criteria, including a diagnosis of congestive heart failure, Chronic Obstructive Pulmonary Disease, advanced cancer, or liver disease.

For children under 21, the criteria are: i) the family and/or legal guardian agree to the provision of pediatric palliative care services; and, ii) there is documentation of a life-threatening diagnosis, including but not limited to the following:

• • • 1. Conditions for which curative treatment is possible, but may fail (e.g., advanced or progressive cancer or complex and severe congenital or acquired heart disease);
      2. Conditions requiring intensive long-term treatment aimed at maintaining quality of life (e.g., HIV infection, cystic fibrosis, or muscular dystrophy);
      3. Progressive conditions for which treatment is exclusively palliative after diagnosis (e.g., progressive metabolic disorders); or,
      4. Conditions involving severe, non-progressive disability, or causing extreme vulnerability to health complications (e.g., extreme prematurity, severe cerebral palsy with recurrent infection or difficult-to-control symptoms).

According to the Author

This bill ensures children face illnesses at home through palliative care. The author explains youth under 21 receiving palliative services are at risk of losing this care if they do not meet the narrower criteria set for adults. This bill allows youth in this situation to retain their eligibility for these benefits if they were deemed eligible for the services before age 21.

Arguments in Support

The Children's Specialty Care Coalition writes in support that this bill would improve the availability of pediatric palliative and hospice care services for children and youth who need it most.

Arguments in Opposition

The Department of Finance is opposed to this bill, stating hospice and palliative care services are already provided to all Medi-Cal beneficiaries, regardless of age, if medically necessary.

FISCAL COMMENTS

According to the Senate Appropriations Committee, pursuant to Senate Rule 28.8, negligible state costs.

VOTES:

ASM HEALTH: 15-0-0

YES: Wood, Waldron, Aguiar-Curry, Arambula, Boerner Horvath, Wendy Carrillo, Flora, Vince Fong, Maienschein, McCarty, Joe Patterson, Rodriguez, Santiago, Villapudua, Weber

ASM APPROPRIATIONS: 15-0-1

YES: Holden, Megan Dahle, Bryan, Calderon, Wendy Carrillo, Dixon, Mike Fong, Hart, Lowenthal, Mathis, Papan, Pellerin, Sanchez, Weber, Ortega

ABS, ABST OR NV: Robert Rivas

ASSEMBLY FLOOR: 80-0-0

YES: Addis, Aguiar-Curry, Alanis, Alvarez, Arambula, Bains, Bauer-Kahan, Bennett, Berman, Boerner, Bonta, Bryan, Calderon, Juan Carrillo, Wendy Carrillo, Cervantes, Chen, Connolly, Megan Dahle, Davies, Dixon, Essayli, Flora, Mike Fong, Vince Fong, Friedman, Gabriel, Gallagher, Garcia, Gipson, Grayson, Haney, Hart, Holden, Hoover, Irwin, Jackson, Jones- Sawyer, Kalra, Lackey, Lee, Low, Lowenthal, Maienschein, Mathis, McCarty, McKinnor, Muratsuchi, Stephanie Nguyen, Ortega, Pacheco, Papan, Jim Patterson, Joe Patterson, Pellerin, Petrie-Norris, Quirk-Silva, Ramos, Reyes, Luz Rivas, Robert Rivas, Rodriguez, Blanca Rubio, Sanchez, Santiago, Schiavo, Soria, Ta, Ting, Valencia, Villapudua, Waldron, Wallis, Ward, Weber, Wicks, Wilson, Wood, Zbur, Rendon

SENATE FLOOR: 38-0-2

YES: Allen, Alvarado-Gil, Archuleta, Ashby, Atkins, Becker, Blakespear, Bradford, Caballero, Cortese, Dahle, Dodd, Durazo, Glazer, Gonzalez, Grove, Hurtado, Jones, Limón, McGuire, Menjivar, Min, Newman, Nguyen, Niello, Ochoa Bogh, Padilla, Portantino, Roth, Rubio, Seyarto, Skinner, Smallwood-Cuevas, Stern, Umberg, Wahab, Wiener, Wilk

ABS, ABST OR NV: Eggman, Laird

UPDATED

VERSION: September 8, 2023

CONSULTANT: Lisa Murawski / HEALTH / (916) 319-2097 FN: 0002255

 THIRD READING  

Bill No: AB 847

Author: Luz Rivas (D)

Amended: 9/8/23 in Senate

Vote: 21

SENATE HEALTH COMMITTEE: 12-0, 7/5/23

AYES: Eggman, Nguyen, Glazer, Gonzalez, Grove, Hurtado, Limón, Menjivar, Roth, Rubio, Wahab, Wiener

SENATE APPROPRIATIONS COMMITTEE: Senate Rule 28.8

SENATE FLOOR: 38-0, 8/17/23 (Consent)

AYES: Allen, Alvarado-Gil, Archuleta, Ashby, Atkins, Becker, Blakespear, Bradford, Caballero, Cortese, Dahle, Dodd, Durazo, Glazer, Gonzalez, Grove, Hurtado, Jones, Limón, McGuire, Menjivar, Min, Newman, Nguyen, Niello, Ochoa Bogh, Padilla, Portantino, Roth, Rubio, Seyarto, Skinner, Smallwood-Cuevas, Stern, Umberg, Wahab, Wiener, Wilk

NO VOTE RECORDED: Eggman, Laird

ASSEMBLY FLOOR: 80-0, 5/30/23 - See last page for vote

SUBJECT: Medi-Cal: pediatric palliative care services

SOURCE: California Children’s Hospice and Palliative Care Coalition

DIGEST:

This bill allows an individual determined eligible to receive Medi-Cal hospice services benefit prior to 21 years of age to continue receiving those services after age 21 when certified as eligible by a physician. This bill allows an individual determined eligible to receive palliative care services prior to age 21 to continue to receive medically necessary palliative care services after 21 years of age when determined to be eligible by the recipient’s treating health care provider.

Senate Floor Amendments of 9/8/23 require the Department of Health Care Services (DHCS) to seek any federal approval it deems necessary in order to implement this bill, include citation to the federal program referenced, and delete reference to a specific subset of Medi-Cal services that is not needed for this bill.

ANALYSIS:

Existing law:

1. Establishes the Medi-Cal Program, administered by the DHCS, under which low-income individuals are eligible for health coverage. [WIC §14000 et seq.]
2. Establishes a schedule of benefits under the Medi-Cal program, which includes Early and Periodic Screening, Diagnostic and Treatment (EPSDT) for individuals under 21 years of age, consistent with the requirements of federal law, and hospice services. [WIC §14132, 42 USC §1396d]
3. Requires, pursuant to federal EPSDT requirements, coverage for individuals under age 21 of all necessary health care, diagnostic services, treatment, and other measures to correct or ameliorate defects and physical and mental illnesses and conditions discovered by the screening services, whether or not such services are covered under the state plan. [WIC §14059.5, 42 USC §1396d]
4. Requires DHCS to implement a pediatric palliative care pilot project to provide hospice services designed to meet the unique needs of children under age 21 receiving curative treatment and whose conditions may result in death, regardless of the estimated length of life left as well as any other services that DHCS deems appropriate. Requires DHCS, in consultation with interested stakeholders, to determine which conditions and prognoses render an individual eligible for such services. [WIC §14132.74]
5. Authorizes licensed hospice agencies and home health agencies licensed to provide hospice care to provide the pediatric palliative care pilot services, subject to criteria developed by DHCS. Requires the pilot to be conducted for a period of time sufficient to evaluate the effectiveness and cost-effectiveness of the services, and requires an evaluation be provided to the Legislature. [WIC §14132.74]
6. Establishes a palliative care benefit with services similar to those required in 3) and 4) above except those services are not limited to children. [WIC §14132.75]

This bill:

1. Allows an individual determined eligible to receive hospice services benefit prior to 21 years of age to continue receiving those services after age 21 when certified as eligible by a physician.
2. Allows an individual determined eligible to receive palliative care services prior to age 21 to continue to receive medically necessary palliative care services after 21 years of age when determined to be eligible by the recipient’s treating health care provider.
3. Conditions implementation of this bill upon the receipt of any necessary federal waivers and federal financial participation.
4. Names this bill “Sophia’s Act” and makes legislative findings that the Legislature intents to investigate future legislation in a number of areas to make pediatric palliative and hospice care more accessible to families.

Comments

1. Author’s statement. According to the author, children with terminal illnesses deserve the right to be in the presence of their loved ones as they face an illness. Oftentimes, ill children are left in a hospital room with limited family visits, surrounded by medical machinery, and looked after by medical staff far away from the comforts of their room, toys, and loved ones. This bill will ensure that children face illnesses at home through palliative care.
2. Hospice and palliative care. According to a 2018 California HealthCare Foundation report, palliative care is specialized medical care that provides patients with relief from the symptoms, pain, and stress that often occur with serious illness. Palliative care is appropriate at any age and at any stage of a serious illness, and can be provided alongside curative treatment. In recent years, the availability of specialty palliative care programs has increased dramatically, as payers, providers, and consumers have come to appreciate its benefits. Community based palliative care services are sponsored by and affiliated with many types of organizations, including health systems, hospices and home health agencies, medical groups, and social service organizations. Hospice is a specific type of palliative care reserved for patients with terminal illness. As in most other forms of coverage, in Medi-Cal, hospice care is available to recipients who have a medical prognosis of six months or less to live, and is provided in lieu of curative treatment for the terminal condition.
3. EPSDT. The purpose of EPSDT is to discover and treat childhood health conditions before they become serious or disabling. States must inform all Medicaid-eligible families about the benefit, screen children at reasonable intervals, diagnose and treat any health problems found, and report certain data regarding EPSDT participation annually to the Centers for Medicare & Medicaid Services (CMS). The EPSDT benefit is more robust than the Medi-Cal benefit package provided to adults. For example, services that are optional benefits under federal law for adults in Medi-Cal (such as dental, eyeglasses, physical and occupational therapy and pharmacy) are required goods and services under EPSDT. The EPSDT benefit is designed to ensure that eligible members receive early detection and preventive care in addition to medically necessary treatment services, so that health problems are averted or diagnosed and treated as early as possible. In 2018, given concerns about discrepancies between what services DHCS was requiring managed care plans to cover for individuals under age 21 and the federal EPSDT requirement, SB 1287 (Hernandez, Chapter 855, Statutes of 2018) was passed to specify that the definition of “medically necessary” for services to individuals under age 21 includes all services required by the federal EPSDT requirements, whether or not those services are included in California’s Medicaid state plan.
4. Differences between the pediatric and adult palliative care benefit. AB 1745 (Chan, Chapter 330, Statutes of 2006) created the Pediatric Palliative Care pilot program, which was implemented via a federal Medicaid waiver. The waiver was first approved by CMS in December 2008, and started as a three-year pilot program on April 1, 2009. On December 27, 2012, the waiver was renewed for an additional five-year term through December 26, 2017. Following that renewal and subsequent discussions with CMS, it was determined that the waiver could not continue as structured and needed to end. However, the palliative care services themselves continued but were integrated into the managed care and fee-for-service delivery systems and are covered under the EPSDT Medi-Cal benefit. DHCS implemented a transition plan that included a warm hand off of palliative care services to Managed Care or Fee-for-Service delivery systems and allowed providers and plans to enter into continuity of care periods for up to 12 months to continue services with out-of-network providers.

Since the passage of AB 1745 and the subsequent transition of children’s palliative care services into the standard Medi-Cal delivery systems, SB 1004 (Hernandez, Chapter 574, Statutes of 2014) established a Medi-Cal palliative care benefit that is not age limited. However, because the SB 1004 palliative care benefit is more limited than the pediatric benefit, when a child ages out of the pediatric benefit, they could lose access to services they had been using.

The adult benefit is only available to recipients who have advanced forms of congestive heart failure, chronic obstructive pulmonary disease, advanced cancer, or liver disease and meet all of the following conditions:

• 1. The recipient is likely to, or has started to, use the hospital or emergency department as a means to manage the member’s advanced disease;
  2. The recipient has an advanced illness with appropriate documentation of continued decline in health status, and is not eligible for or declines hospice enrollment;
  3. The recipient’s death within a year would not be unexpected based on clinical status;
  4. The recipient has either received appropriate patient-desired medical therapy or is an individual for whom patient-desired medical therapy is no longer effective; and,
  5. The recipient and, if applicable, the family or designated support person, agrees to attempt, as medically/clinically appropriate, in-home, residential-based, or outpatient disease management/palliative care instead of first going to the emergency department; and participate in advance care planning discussions.

By comparison, because of the more far-reaching EPSDT benefit, the pediatric benefit requires only that the family or legal guardian agree to the provision of palliative care services and documentation of a life-threatening diagnosis, including, but not limited to the following:

• 1. Conditions for which curative treatment is possible, but may fail (e.g., advanced or progressive cancer or complex and severe congenital or acquired heart disease);
  2. Conditions requiring intensive long-term treatment aimed at maintaining quality of life (e.g., human immunodeficiency virus infection, cystic fibrosis, or muscular dystrophy);
  3. Progressive conditions for which treatment is exclusively palliative after diagnosis (e.g., progressive metabolic disorders or severe forms of osteogenesis imperfecta); or,
  4. Conditions involving severe, non-progressive disability, or causing extreme vulnerability to health complications (e.g., extreme prematurity, severe neurologic sequelae of infectious disease or trauma, severe cerebral palsy with recurrent infection or difficult-to-control symptoms).

This bill allows individuals receiving the pediatric benefit to continue to receive those services until age 26 even if they do not have one of the qualifying diseases or meet all of the conditions for the SB 1004 palliative care benefit.

FISCAL EFFECT: Appropriation: No Fiscal Com.: Yes Local: Yes

SUPPORT: (Verified 9/11/23)

California Children’s Hospice and Palliative Care Coalition (source)

California Catholic Conference

California Children’s Hospital Association

Children’s Specialty Care Coalition

OPPOSITION: (Verified 9/11/23)

Department of Finance

ARGUMENTS IN SUPPORT: The Children’s Specialty Care Coalition writes that pediatric palliative care is care that is focused on the symptoms and stress of living with a serious illness. It can be valuable for children at all stages of disease, focuses on quality of life, and aims to help improve family’s well-being. Pediatric palliative care may decrease health care costs through its focus on care coordination and decreasing the time children must spend in the hospital or emergency rooms. While children with serious illnesses (such as cancer, congenital heart disease and genetic conditions) are a relatively small proportion of all children, they are a growing population as medical advances allow them to live longer lives, often relying on access to costly specialized medical care and technology. These children can benefit from pediatric palliative care, with its attention to quality of their lives along with the care that can help them live as long as possible.

ARGUMENTS IN OPPOSITION: The Department of Finance is opposed to this bill because hospice and palliative care services are already provided to all Medi-Cal beneficiaries, regardless of age, if medically necessary.

ASSEMBLY FLOOR: 80-0, 5/30/23

AYES: Addis, Aguiar-Curry, Alanis, Alvarez, Arambula, Bains, Bauer-Kahan, Bennett, Berman, Boerner, Bonta, Bryan, Calderon, Juan Carrillo, Wendy Carrillo, Cervantes, Chen, Connolly, Megan Dahle, Davies, Dixon, Essayli, Flora, Mike Fong, Vince Fong, Friedman, Gabriel, Gallagher, Garcia, Gipson, Grayson, Haney, Hart, Holden, Hoover, Irwin, Jackson, Jones-Sawyer, Kalra, Lackey, Lee, Low, Lowenthal, Maienschein, Mathis, McCarty, McKinnor, Muratsuchi, Stephanie Nguyen, Ortega, Pacheco, Papan, Jim Patterson, Joe Patterson, Pellerin, Petrie-Norris, Quirk-Silva, Ramos, Reyes, Luz Rivas, Robert Rivas, Rodriguez, Blanca Rubio, Sanchez, Santiago, Schiavo, Soria, Ta, Ting, Valencia, Villapudua, Waldron, Wallis, Ward, Weber, Wicks, Wilson, Wood, Zbur, Rendon

Prepared by: Jen Flory / HEALTH / (916) 651-4111

9/11/23 18:24:18

**** END ****

CONCURRENCE IN SENATE AMENDMENTS

CSA1 Bill Id:AB 847

Author:(Luz Rivas)

As Amended Ver:July 10, 2023

Majority vote

SUMMARY

Allows an individual determined eligible for hospice services in the Medi-Cal program prior to 21 years of age to be deemed to meet medical necessity for the service after 21 years of age, and allows an individual determined eligible for palliative care prior to 21 years of age to be deemed to meet medical necessity for the services until 26 years of age.

Senate Amendments

Add intent to investigate future legislation to make pediatric palliative and hospice care more accessible to families, as specified.

COMMENTS

1. Palliative Care. According to the Center to Advance Palliative Care, palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially trained team of doctors, nurses and other specialists who work together with a patient's other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment. As a Medi-Cal benefit, palliative care includes, but is not limited to, advance care planning, palliative care assessment and consultation, pain and symptom management, plan of care, care coordination, nursing and psychosocial services, discharge planning, physical or occupational therapy, and palliative care team services.
2. Pediatric Palliative Care. The American Academy of Pediatrics recommended in 2000 that pediatric palliative care begin on the diagnosis of a child's life-threatening condition and continue for the duration of the disease, alongside curative care or life-saving treatment.

AB 1745 (Chan), Chapter 330, Statutes of 2006, created the Pediatric Palliative Care pilot program. The pilot was implemented through a "1915(c)" waiver option (pursuant to 1915(c) of the Federal Social Security Act), which allows states to explore provision of long-term care services in home- and community-based settings. The Pediatric Palliative Care waiver, which was originally approved by the Centers for Medicare & Medicaid Services in 2008, ended on December 31, 2018. To ensure continuity services for recipients who transitioned from the waiver, palliative care services were transitioned to the fee-for-service Medi-Cal system or the enrollee's Medi-Cal managed care plan, as applicable, as of January 1, 2019.

1. Early and Periodic Screening, Diagnostic and Treatment (EPSDT). Pediatric palliative care services are covered under the EPSDT Medi-Cal benefit. EPSDT services are existing Medi-Cal benefits that provide comprehensive, preventive, diagnostic and treatment services to eligible participants under the age of 21, as required by federal law. Under the EPSDT benefit, states are required to provide any Medicaid-covered service listed within the categories of mandatory and optional services in the federal law, even services that are not designated as covered benefits by a state Medicaid program. Medi-Cal enrollees under 21 are eligible for EPSDT services when the services are determined to be medically necessary "to correct or ameliorate defects and physical and mental illnesses or conditions," which creates a broad entitlement to services. In the context of the pediatric palliative care, this means the state offers more generous eligibility criteria to children under 21. Under federal requirements, a Medi-Cal enrollee under 21 may be eligible for palliative care and hospice services concurrently with curative care.
2. Hospice. Hospice care is a Medi-Cal benefit that serves terminally ill members. It consists of interventions that focus primarily on pain and symptom management rather than a cure or the prolongation of life. To qualify for hospice care, a Medi-Cal member must have a life expectancy of six months or less.
3. Medi-Cal Palliative Care Benefit. The Medi-Cal palliative care benefit is offered in both managed care and FFS delivery systems.
   1. Services. Medi-Cal makes no age distinction between the service codes billable as part of the palliative care benefit for children versus those billable for adults. Medi-Cal billing policy lists the covered services and requires different modifiers to be used to differentiate billing for palliative care for an adult versus for a child.
   2. Eligibility. The Department of Health Care Services, which administers the Medi-Cal program, establishes general eligibility criteria for palliative care that apply to all enrollees, but also notes children under 21 who do not meet the general eligibility criteria may become eligible for palliative care services according to a more expansive criteria, consistent with the provision of EPSDT services.

The general criteria makes eligible someone with an advanced illness whose health is in decline, who has started to rely on the hospital or emergency department to manage their condition, whose death within a year would not be unexpected based on clinical status, and who meets specified clinical criteria, including a diagnosis of congestive heart failure, Chronic Obstructive Pulmonary Disease, advanced cancer, or liver disease.

For children under 21, the criteria are: i) the family and/or legal guardian agree to the provision of pediatric palliative care services; and, ii) there is documentation of a life-threatening diagnosis, including but not limited to the following:

• • • 1. Conditions for which curative treatment is possible, but may fail (e.g., advanced or progressive cancer or complex and severe congenital or acquired heart disease);
      2. Conditions requiring intensive long-term treatment aimed at maintaining quality of life (e.g., HIV infection, cystic fibrosis, or muscular dystrophy);
      3. Progressive conditions for which treatment is exclusively palliative after diagnosis (e.g., progressive metabolic disorders); or,
      4. Conditions involving severe, non-progressive disability, or causing extreme vulnerability to health complications (e.g., extreme prematurity, severe cerebral palsy with recurrent infection or difficult-to-control symptoms).

According to the Author

This bill ensures children face illnesses at home through palliative care. The author explains youth under 21 receiving palliative services are at risk of losing this care if they do not meet the narrower criteria set for adults. This bill allows youth in this situation to retain their eligibility for these benefits if they were deemed eligible for the services before age 21.

Arguments in Support

The Children's Specialty Care Coalition writes in support that this bill would improve the availability of pediatric palliative and hospice care services for children and youth who need it most.

Arguments in Opposition

The Department of Finance is opposed to this bill, stating hospice and palliative care services are already provided to all Medi-Cal beneficiaries, regardless of age, if medically necessary.

FISCAL COMMENTS

According to the Senate Appropriations Committee, pursuant to Senate Rule 28.8, negligible state costs.

VOTES:

ASM HEALTH: 15-0-0

YES: Wood, Waldron, Aguiar-Curry, Arambula, Boerner Horvath, Wendy Carrillo, Flora, Vince Fong, Maienschein, McCarty, Joe Patterson, Rodriguez, Santiago, Villapudua, Weber

ASM APPROPRIATIONS: 15-0-1

YES: Holden, Megan Dahle, Bryan, Calderon, Wendy Carrillo, Dixon, Mike Fong, Hart, Lowenthal, Mathis, Papan, Pellerin, Sanchez, Weber, Ortega

ABS, ABST OR NV: Robert Rivas

ASSEMBLY FLOOR: 80-0-0

YES: Addis, Aguiar-Curry, Alanis, Alvarez, Arambula, Bains, Bauer-Kahan, Bennett, Berman, Boerner, Bonta, Bryan, Calderon, Juan Carrillo, Wendy Carrillo, Cervantes, Chen, Connolly, Megan Dahle, Davies, Dixon, Essayli, Flora, Mike Fong, Vince Fong, Friedman, Gabriel, Gallagher, Garcia, Gipson, Grayson, Haney, Hart, Holden, Hoover, Irwin, Jackson, Jones‑Sawyer, Kalra, Lackey, Lee, Low, Lowenthal, Maienschein, Mathis, McCarty, McKinnor, Muratsuchi, Stephanie Nguyen, Ortega, Pacheco, Papan, Jim Patterson, Joe Patterson, Pellerin, Petrie-Norris, Quirk-Silva, Ramos, Reyes, Luz Rivas, Robert Rivas, Rodriguez, Blanca Rubio, Sanchez, Santiago, Schiavo, Soria, Ta, Ting, Valencia, Villapudua, Waldron, Wallis, Ward, Weber, Wicks, Wilson, Wood, Zbur, Rendon

SENATE FLOOR: 38-0-2

YES: Allen, Alvarado-Gil, Archuleta, Ashby, Atkins, Becker, Blakespear, Bradford, Caballero, Cortese, Dahle, Dodd, Durazo, Glazer, Gonzalez, Grove, Hurtado, Jones, Limón, McGuire, Menjivar, Min, Newman, Nguyen, Niello, Ochoa Bogh, Padilla, Portantino, Roth, Rubio, Seyarto, Skinner, Smallwood-Cuevas, Stern, Umberg, Wahab, Wiener, Wilk

ABS, ABST OR NV: Eggman, Laird

UPDATED

VERSION: July 10, 2023

CONSULTANT: Lisa Murawski / HEALTH / (916) 319-2097 FN: 0001283

 CONSENT  

Bill No: AB 847

Author: Luz Rivas (D)

Amended: 7/10/23 in Senate

Vote: 21

SENATE HEALTH COMMITTEE: 12-0, 7/5/23

AYES: Eggman, Nguyen, Glazer, Gonzalez, Grove, Hurtado, Limón, Menjivar, Roth, Rubio, Wahab, Wiener

SENATE APPROPRIATIONS COMMITTEE: Senate Rule 28.8

ASSEMBLY FLOOR: 80-0, 5/30/23 - See last page for vote

SUBJECT: Medi-Cal: pediatric palliative care services

SOURCE: California Children’s Hospice and Palliative Care Coalition

DIGEST: This bill

extends eligibility for pediatric palliative care services for Medi-Cal recipients who have been determined eligible for those services prior to 21 years of age, until 26 years of age. Also deems a recipient determined eligible to receive hospice services as an Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) benefit prior to 21 years of age as meeting the medical necessity criteria for hospice services after 21 years of age.

ANALYSIS:

Existing law:

1. Establishes the Medi-Cal Program, administered by the Department of Health Care Services (DHCS), under which low-income individuals are eligible for health coverage. (Welfare & Institutions Code (WIC) §14000 et seq.)
2. Establishes a schedule of benefits under the Medi-Cal program, which includes EPSDT for individuals under 21 years of age, consistent with the requirements of federal law, and hospice services. (WIC §14132, 42 U.S. Cod (USC) §1396d)
3. Requires, pursuant to federal EPSDT requirements, coverage for individuals under age 21 of all necessary health care, diagnostic services, treatment, and other measures to correct or ameliorate defects and physical and mental illnesses and conditions discovered by the screening services, whether or not such services are covered under the state plan. (WIC §14059.5, 42 U.S. Code (USC) §1396d)
4. Requires DHCS to implement a pediatric palliative care pilot project to provide hospice services designed to meet the unique needs of children under age 21 receiving curative treatment and whose conditions may result in death, regardless of the estimated length of life left as well as any other services that DHCS deems appropriate. Requires DHCS, in consultation with interested stakeholders, to determine which conditions and prognoses render an individual eligible for such services. (WIC §14132.74)
5. Authorizes licensed hospice agencies and home health agencies licensed to provide hospice care to provide the pediatric palliative care pilot services, subject to criteria developed by DHCS. Requires the pilot to be conducted for a period of time sufficient to evaluate the effectiveness and cost-effectiveness of the services, and requires an evaluation be provided to the Legislature. (WIC §14132.74)
6. Establishes a palliative care benefit with services similar to those required in 3) and 4) above except those services are not limited to children. (WIC §14132.75)

This bill:

1. Deems an individual determined eligible to receive hospice services as an EPSDT benefit prior to 21 years of age as meeting the medical necessity criteria for hospice services after 21 years of age.
2. Extends eligibility for palliative care services until 26 years of age for individuals determined eligible for palliative care services as an EPSDT benefit prior to 21 years of age.
3. Conditions implementation of this bill upon the receipt of any necessary federal waivers and federal financial participation.
4. Names this bill “Sophia’s Act” and makes legislative findings that the Legislature intents to investigate future legislation in a number of areas to make pediatric palliative and hospice care more accessible to families.

Comments

1. Author’s statement. According to the author, children with terminal illnesses deserve the right to be in the presence of their loved ones as they face an illness. Oftentimes, ill children are left in a hospital room with limited family visits, surrounded by medical machinery, and looked after by medical staff far away from the comforts of their room, toys, and loved ones. This bill will ensure that children face illnesses at home through palliative care.
2. Hospice and palliative care. According to a 2018 California HealthCare Foundation report, palliative care is specialized medical care that provides patients with relief from the symptoms, pain, and stress that often occur with serious illness. Palliative care is appropriate at any age and at any stage of a serious illness, and can be provided alongside curative treatment. In recent years the availability of specialty palliative care programs has increased dramatically, as payers, providers, and consumers have come to appreciate its benefits. Community based palliative care services are sponsored by and affiliated with many types of organizations, including health systems, hospices and home health agencies, medical groups, and social service organizations. Hospice is a specific type of palliative care reserved for patients with terminal illness. As in most other forms of coverage, in Medi-Cal, hospice care is available to recipients who have a medical prognosis of six months or less to live, and is provided in lieu of curative treatment for the terminal condition.
3. EPSDT. The purpose of EPSDT is to discover and treat childhood health conditions before they become serious or disabling. States must inform all Medicaid-eligible families about the benefit, screen children at reasonable intervals, diagnose and treat any health problems found, and report certain data regarding EPSDT participation annually to the Centers for Medicare & Medicaid Services (CMS). The EPSDT benefit is more robust than the Medi-Cal benefit package provided to adults. For example, services that are optional benefits under federal law for adults in Medi-Cal (such as dental, eyeglasses, physical and occupational therapy and pharmacy) are required goods and services under EPSDT. The EPSDT benefit is designed to ensure that eligible members receive early detection and preventive care in addition to medically necessary treatment services, so that health problems are averted or diagnosed and treated as early as possible. In 2018, given concerns about discrepancies between what services DHCS was requiring managed care plans to cover for individuals under age 21 and the federal EPSDT requirement, SB 1287 (Hernandez, Chapter 855, Statutes of 2018) was passed to specify that the definition of “medically necessary” for services to individuals under age 21 includes all services required by the federal EPSDT requirements, whether or not those services are included in California’s Medicaid state plan.
4. Differences between the pediatric and adult palliative care benefit. AB 1745 (Chan, Chapter 330, Statutes of 2006) created the Pediatric Palliative Care pilot program, which was implemented via a federal Medicaid waiver. The waiver was first approved by CMS in December 2008, and started as a three year pilot program on April 1, 2009. On December 27, 2012, the waiver was renewed for an additional five year term through December 26, 2017. Following that renewal and subsequent discussions with CMS, it was determined that the waiver could not continue as structured and needed to end. However, the palliative care services themselves continued but were integrated into the managed care and fee-for-service delivery systems and are covered under the EPSDT Medi-Cal benefit. DHCS implemented a transition plan that included a warm hand off of palliative care services to Managed Care or Fee-for-Service delivery systems and allowed providers and plans to enter into continuity of care periods for up to 12 months to continue services with out-of-network providers.

Since the passage of AB 1745 and the subsequent transition of children’s palliative care services into the standard Medi-Cal delivery systems, SB 1004 (Hernandez, Chapter 574, Statutes of 2014) established a Medi-Cal palliative care benefit that is not age limited. However, because the SB 1004 palliative care benefit is more limited than the pediatric benefit, when a child ages out of the pediatric benefit, they could lose access to services they had been using.

The adult benefit is only available to recipients who have advanced forms of congestive heart failure, chronic obstructive pulmonary disease, advanced cancer, or liver disease and meet all of the following conditions:

• 1. The recipient is likely to, or has started to, use the hospital or emergency department as a means to manage the member’s advanced disease;
  2. The recipient has an advanced illness with appropriate documentation of continued decline in health status, and is not eligible for or declines hospice enrollment;
  3. The recipient’s death within a year would not be unexpected based on clinical status;
  4. The recipient has either received appropriate patient-desired medical therapy or is an individual for whom patient-desired medical therapy is no longer effective; and,
  5. The recipient and, if applicable, the family or designated support person, agrees to attempt, as medically/clinically appropriate, in-home, residential-based, or outpatient disease management/palliative care instead of first going to the emergency department; and participate in advance care planning discussions.

By comparison, because of the more far-reaching EPSDT benefit, the pediatric benefit requires only that the family or legal guardian agree to the provision of palliative care services and documentation of a life-threatening diagnosis, including, but not limited to the following:

• 1. Conditions for which curative treatment is possible, but may fail (e.g., advanced or progressive cancer or complex and severe congenital or acquired heart disease);
  2. Conditions requiring intensive long-term treatment aimed at maintaining quality of life (e.g., human immunodeficiency virus infection, cystic fibrosis, or muscular dystrophy);
  3. Progressive conditions for which treatment is exclusively palliative after diagnosis (e.g., progressive metabolic disorders or severe forms of osteogenesis imperfecta); or,
  4. Conditions involving severe, non-progressive disability, or causing extreme vulnerability to health complications (e.g., extreme prematurity, severe neurologic sequelae of infectious disease or trauma, severe cerebral palsy with recurrent infection or difficult-to-control symptoms).

This bill allows individuals receiving the pediatric benefit to continue to receive those services until age 26 even if they do not have one of the qualifying diseases or meet all of the conditions for the SB 1004 palliative care benefit.

1. Policy comment. Federal approval of the extended pediatric palliative care will likely require a waiver given the Medicaid comparability requirement. According to federal rules, a Medicaid-covered benefit generally must be provided in the same amount, duration, and scope to all enrollees. Here, enrollees who did not receive palliative care services prior to age 21 would not be eligible for the same services for the same conditions as an individual who began receiving those services prior to age 21. However, this requirement can be waived on a time-limited basis if states can meet specified budgetary criteria and provide regular reports or evaluations to CMS. Meeting the requirements of such a waiver may require a further limiting of the benefit.

FISCAL EFFECT: Appropriation: No Fiscal Com.: Yes Local: Yes

SUPPORT: (Verified 8/14/23)

California Children’s Hospice and Palliative Care Coalition (source)

California Children’s Hospital Association

Children’s Specialty Care Coalition

OPPOSITION: (Verified 8/14/23)

None received

ARGUMENTS IN SUPPORT: The Children’s Specialty Care Coalition writes that pediatric palliative care is care that is focused on the symptoms and stress of living with a serious illness. It can be valuable for children at all stages of disease, focuses on quality of life, and aims to help improve family’s well-being. Pediatric palliative care may decrease health care costs through its focus on care coordination and decreasing the time children must spend in the hospital or emergency rooms. While children with serious illnesses (such as cancer, congenital heart disease and genetic conditions) are a relatively small proportion of all children, they are a growing population as medical advances allow them to live longer lives, often relying on access to costly specialized medical care and technology. These children can benefit from pediatric palliative care, with its attention to quality of their lives along with the care that can help them live as long as possible.

ASSEMBLY FLOOR: 80-0, 5/30/23

AYES: Addis, Aguiar-Curry, Alanis, Alvarez, Arambula, Bains, Bauer-Kahan, Bennett, Berman, Boerner, Bonta, Bryan, Calderon, Juan Carrillo, Wendy Carrillo, Cervantes, Chen, Connolly, Megan Dahle, Davies, Dixon, Essayli, Flora, Mike Fong, Vince Fong, Friedman, Gabriel, Gallagher, Garcia, Gipson, Grayson, Haney, Hart, Holden, Hoover, Irwin, Jackson, Jones-Sawyer, Kalra, Lackey, Lee, Low, Lowenthal, Maienschein, Mathis, McCarty, McKinnor, Muratsuchi, Stephanie Nguyen, Ortega, Pacheco, Papan, Jim Patterson, Joe Patterson, Pellerin, Petrie-Norris, Quirk-Silva, Ramos, Reyes, Luz Rivas, Robert Rivas, Rodriguez, Blanca Rubio, Sanchez, Santiago, Schiavo, Soria, Ta, Ting, Valencia, Villapudua, Waldron, Wallis, Ward, Weber, Wicks, Wilson, Wood, Zbur, Rendon

Prepared by: Jen Flory / HEALTH / (916) 651-4111

8/16/23 14:47:18

**** END ****

SENATE COMMITTEE ON HEALTH

Senator Dr. Susan Talamantes Eggman, Chair

BILL NO: AB 847

SUBJECT: Medi-Cal: pediatric palliative care services

SUMMARY:

Extends eligibility for pediatric palliative care services for Medi-Cal recipients who have been determined eligible for those services prior to 21 years of age, until 26 years of age. Also deems a recipient determined eligible to receive hospice services as an Early and Periodic Screening, Diagnosis, and Treatment benefit prior to 21 years of age as meeting the medical necessity criteria for hospice services after 21 years of age.

Existing law:

1. Establishes the Medi-Cal Program, administered by the Department of Health Care Services (DHCS), under which low-income individuals are eligible for health coverage. [WIC §14000 et seq.]
2. Establishes a schedule of benefits under the Medi-Cal program, which includes Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) for individuals under 21 years of age, consistent with the requirements of federal law, and hospice services. [WIC §14132, 42 USC §1396d]
3. Requires, pursuant to federal EPSDT requirements, coverage for individuals under age 21 of all necessary health care, diagnostic services, treatment, and other measures to correct or ameliorate defects and physical and mental illnesses and conditions discovered by the screening services, whether or not such services are covered under the State plan. [WIC §14059.5, 42 USC §1396d]
4. Requires DHCS to implement a pediatric palliative care pilot project to provide hospice services designed to meet the unique needs of children under age 21 receiving curative treatment and whose conditions may result in death, regardless of the estimated length of life left as well as any other services that DHCS deems appropriate. Requires DHCS, in consultation with interested stakeholders, to determine which conditions and prognoses render an individual eligible for such services. [WIC §14132.74]
5. Authorizes licensed hospice agencies and home health agencies licensed to provide hospice care to provide the pediatric palliative care pilot services, subject to criteria developed by DHCS. Requires the pilot to be conducted for a period of time sufficient to evaluate the effectiveness and cost-effectiveness of the services, and requires an evaluation be provided to the Legislature. [WIC §14132.74]
6. Establishes a palliative care benefit with services similar to those required in 3) and 4) above except those services are not limited to children. [WIC §14132.75]

This bill:

1. Deems an individual determined eligible to receive hospice services as an EPSDT benefit prior to 21 years of age as meeting the medical necessity criteria for hospice services after 21 years of age.
2. Extends eligibility for palliative care services until 26 years of age for individuals determined eligible for palliative care services as an EPSDT benefit prior to 21 years of age.
3. Conditions implementation of this bill upon the receipt of any necessary federal waivers and federal financial participation.
4. Names the bill “Sophia’s Act” and makes legislative findings that the Legislature intents to investigate future legislation in a number of areas to make pediatric palliative and hospice care more accessible to families.

FISCAL EFFECT:

According to the Assembly Appropriations Committee, this bill would have costs of an unknown amount, possibly hundreds of thousands of dollars annually, to DHCS to implement changes required by this bill (General Fund and federal funds). DHCS will need to revise policies, issue guidance, and pay for expanded coverage of palliative care and hospice care. The number of Medi-Cal beneficiaries who would be eligible for more services as a result of this bill is not known, but is expected to be relatively small.

PRIOR VOTES:

COMMENTS:

1. Author’s statement. According to the author, Children with terminal illnesses deserve the right to be in the presence of their loved ones as they face an illness. Oftentimes, ill children are left in a hospital room with limited family visits, surrounded by medical machinery, and looked after by medical staff far away from the comforts of their room, toys, and loved ones. This bill will ensure that children face illnesses at home through palliative care.
2. Hospice and palliative care. According to a 2018 California HealthCare Foundation (CHCF) report, palliative care is specialized medical care that provides patients with relief from the symptoms, pain, and stress that often occur with serious illness. Palliative care is appropriate at any age and at any stage of a serious illness, and can be provided alongside curative treatment. In recent years the availability of specialty palliative care programs has increased dramatically, as payers, providers, and consumers have come to appreciate its benefits. Community based palliative care services are sponsored by and affiliated with many types of organizations, including health systems, hospices and home health agencies, medical groups, and social service organizations. Hospice is a specific type of palliative care reserved for patients with terminal illness. As in most other forms of coverage, in Medi-Cal, hospice care is available to recipients who have a medical prognosis of six months or less to live, and is provided in lieu of curative treatment for the terminal condition.
   
3. EPSDT. The purpose of EPSDT is to discover and treat childhood health conditions before they become serious or disabling. States must inform all Medicaid-eligible families about the benefit, screen children at reasonable intervals, diagnose and treat any health problems found, and report certain data regarding EPSDT participation annually to the Centers for Medicare & Medicaid Services (CMS). The EPSDT benefit is more robust than the Medi-Cal benefit package provided to adults. For example, services that are optional benefits under federal law for adults in Medi-Cal (such as dental, eyeglasses, physical and occupational therapy and pharmacy) are required goods and services under EPSDT. The EPSDT benefit is designed to ensure that eligible members receive early detection and preventive care in addition to medically necessary treatment services, so that health problems are averted or diagnosed and treated as early as possible. In 2018, given concerns about discrepancies between what services DHCS was requiring managed care plans to cover for individuals under age 21 and the federal EPSDT requirement, SB 1287 (Hernandez, Chapter 855, Statutes of 2018) was passed to specify that the definition of “medically necessary” for services to individuals under age 21 includes all services required by the federal EPSDT requirements, whether or not those services are included in California’s Medicaid state plan.
4. Differences between the pediatric and adult palliative care benefit. AB 1745 (Chan, Chapter 330, Statutes of 2006) created the Pediatric Palliative Care pilot program, which was implemented via a federal Medicaid waiver. The waiver was first approved by CMS in December 2008, and started as a three year pilot program on April 1, 2009. On December 27, 2012, the waiver was renewed for an additional five year term through December 26, 2017. Following that renewal and subsequent discussions with CMS, it was determined that the waiver could not continue as structured and needed to end. However, the palliative care services themselves continued but were integrated into the managed care and fee-for-service delivery systems and are covered under the EPSDT Medi-Cal benefit. DHCS implemented a transition plan that included a warm hand off of palliative care services to Managed Care or Fee-for-Service delivery systems and allowed providers and plans to enter into continuity of care periods for up to 12 months to continue services with out-of-network providers.

Since the passage of AB 1745 and the subsequent transition of children’s palliative care services into the standard Medi-Cal delivery systems, SB 1004 (Hernandez, Chapter 574, Statutes of 2014) established a Medi-Cal palliative care benefit that is not age limited. However, because the SB 1004 palliative care benefit is more limited than the pediatric benefit, when a child ages out of the pediatric benefit, they could lose access to services they had been using.

The adult benefit is only available to recipients who have advanced forms of congestive heart failure, chronic obstructive pulmonary disease, advanced cancer, or liver disease and meet all of the following conditions:

1. The recipient is likely to, or has started to, use the hospital or emergency department as a means to manage the member’s advanced disease;
2. The recipient has an advanced illness with appropriate documentation of continued decline in health status, and is not eligible for or declines hospice enrollment;
3. The recipient’s death within a year would not be unexpected based on clinical status;
4. The recipient has either received appropriate patient-desired medical therapy or is an individual for whom patient-desired medical therapy is no longer effective; and,
5. The recipient and, if applicable, the family or designated support person, agrees to attempt, as medically/clinically appropriate, in-home, residential-based, or outpatient disease management/palliative care instead of first going to the emergency department; and participate in advance care planning discussions.

By comparison, because of the more far-reaching EPSDT benefit, the pediatric benefit requires only that the family or legal guardian agree to the provision of palliative care services and documentation of a life-threatening diagnosis, including, but not limited to the following:

1. Conditions for which curative treatment is possible, but may fail (e.g., advanced or progressive cancer or complex and severe congenital or acquired heart disease);
2. Conditions requiring intensive long-term treatment aimed at maintaining quality of life (e.g., human immunodeficiency virus infection, cystic fibrosis, or muscular dystrophy);
3. Progressive conditions for which treatment is exclusively palliative after diagnosis (e.g., progressive metabolic disorders or severe forms of osteogenesis imperfecta); or,
4. Conditions involving severe, non-progressive disability, or causing extreme vulnerability to health complications (e.g., extreme prematurity, severe neurologic sequelae of infectious disease or trauma, severe cerebral palsy with recurrent infection or difficult-to-control symptoms).

This bill would allow individuals receiving the pediatric benefit to continue to receive those services until age 26 even if they do not have one of the qualifying diseases or meet all of the conditions for the SB 1004 palliative care benefit.

1. Prior legislation. SB 1287 (Hernandez, Chapter 855, Statutes of 2018) specifies that the definition of “medically necessary” for services to individuals under age 21 includes all services required by the federal EPSDT requirements, whether or not those services are included in California’s Medicaid state plan.

SB 1004 (Hernandez, Chapter 574, Statutes of 2014) established the Medi-Cal palliative care benefit.

AB 1745 (Chan, Chapter 330, Statutes of 2006) created the Pediatric Palliative Care pilot program.

1. Support. The Children’s Specialty Care Coalition writes that pediatric palliative care is care that is focused on the symptoms and stress of living with a serious illness. It can be valuable for children at all stages of disease, focuses on quality of life, and aims to help improve family’s well-being. Pediatric palliative care may decrease health care costs through its focus on care coordination and decreasing the time children must spend in the hospital or emergency rooms. While children with serious illnesses (such as cancer, congenital heart disease and genetic conditions) are a relatively small proportion of all children, they are a growing population as medical advances allow them to live longer lives, often relying on access to costly specialized medical care and technology. These children can benefit from pediatric palliative care, with its attention to quality of their lives along with the care that can help them live as long as possible.
2. Policy comment. Federal approval of the extended pediatric palliative care will likely require a waiver given the Medicaid comparability requirement. According to federal rules, a Medicaid-covered benefit generally must be provided in the same amount, duration, and scope to all enrollees. Here, enrollees who did not receive palliative care services prior to age 21 would not be eligible for the same services for the same conditions as an individual who began receiving those services prior to age 21. However, this requirement can be waived on a time-limited basis if states can meet specified budgetary criteria and provide regular reports or evaluations to CMS. Meeting the requirements of such a waiver may require a further limiting of the benefit.
3. Amendments. The intent language needs multiple, clarifying amendments.

SUPPORT AND OPPOSITION:

Support: California Children’s Hospice and Palliative Care Coalition (sponsor)

California Children’s Hospital Association

Children’s Specialty Care Coalition

Oppose: None received.

-- END --

ASSEMBLY THIRD READING

ATR Bill Id:AB 847

Author:(Luz Rivas)

As Amended Ver:April 20, 2023

Majority vote

SUMMARY

Allows an individual determined eligible for hospice services in the Medi-Cal program prior to 21 years of age to be deemed to meet medical necessity for the service after 21 years of age, and allows an individual determined eligible for palliative care prior to 21 years of age to be deemed to meet medical necessity for the services until 26 years of age.

Major Provisions

COMMENTS

1. Palliative Care. According to the Center to Advance Palliative Care, palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially trained team of doctors, nurses and other specialists who work together with a patient's other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment. As a Medi-Cal benefit, palliative care includes, but is not limited to, advance care planning, palliative care assessment and consultation, pain and symptom management, plan of care, care coordination, nursing and psychosocial services, discharge planning, physical or occupational therapy, and palliative care team services.
2. Pediatric Palliative Care. The American Academy of Pediatrics recommended in 2000 that pediatric palliative care begin on the diagnosis of a child's life-threatening condition and continue for the duration of the disease, alongside curative care or life-saving treatment.

AB 1745 (Chan), Chapter 330, Statutes of 2006, created the Pediatric Palliative Care pilot program. The pilot was implemented through a "1915(c)" waiver option (pursuant to 1915(c) of the Federal Social Security Act), which allows states to explore provision of long-term care services in home- and community-based settings. The Pediatric Palliative Care waiver, which was originally approved by the Centers for Medicare & Medicaid Services in 2008, ended on December 31, 2018. To ensure continuity services for recipients who transitioned from the waiver, palliative care services were transitioned to the fee-for-service Medi-Cal system or the enrollee's Medi-Cal managed care plan, as applicable, as of January 1, 2019.

1. Early and Periodic Screening, Diagnostic and Treatment (EPSDT). Pediatric palliative care services are covered under the EPSDT Medi-Cal benefit. EPSDT services are existing Medi-Cal benefits that provide comprehensive, preventive, diagnostic and treatment services to eligible participants under the age of 21, as required by federal law. Under the EPSDT benefit, states are required to provide any Medicaid-covered service listed within the categories of mandatory and optional services in the federal law, even services that are not designated as covered benefits by a state Medicaid program. Medi-Cal enrollees under 21 are eligible for EPSDT services when the services are determined to be medically necessary "to correct or ameliorate defects and physical and mental illnesses or conditions," which creates a broad entitlement to services. In the context of the pediatric palliative care, this means the state offers more generous eligibility criteria to children under 21. Under federal requirements, a Medi-Cal enrollee under 21 may be eligible for palliative care and hospice services concurrently with curative care.
2. Hospice. Hospice care is a Medi-Cal benefit that serves terminally ill members. It consists of interventions that focus primarily on pain and symptom management rather than a cure or the prolongation of life. To qualify for hospice care, a Medi-Cal member must have a life expectancy of six months or less.
3. Medi-Cal Palliative Care Benefit. The Medi-Cal palliative care benefit is offered in both managed care and FFS delivery systems.
   1. Services. Medi-Cal makes no age distinction between the service codes billable as part of the palliative care benefit for children versus those billable for adults. Medi-Cal billing policy lists the covered services and requires different modifiers to be used to differentiate billing for palliative care for an adult versus for a child.
   2. Eligibility. The Department of Health Care Services (DHCS), which administers the Medi-Cal program, establishes general eligibility criteria for palliative care that apply to all enrollees, but also notes children under 21 who do not meet the general eligibility criteria may become eligible for palliative care services according to a more expansive criteria, consistent with the provision of EPSDT services.

The general criteria makes eligible someone with an advanced illness whose health is in decline, who has started to rely on the hospital or emergency department to manage their condition, whose death within a year would not be unexpected based on clinical status, and who meets specified clinical criteria, including a diagnosis of congestive heart failure, Chronic Obstructive Pulmonary Disease, advanced cancer, or liver disease.

For children under 21, the criteria are: i) the family and/or legal guardian agree to the provision of pediatric palliative care services; and, ii) there is documentation of a life-threatening diagnosis, including but not limited to the following:

• • 1. Conditions for which curative treatment is possible, but may fail (e.g., advanced or progressive cancer or complex and severe congenital or acquired heart disease);
    2. Conditions requiring intensive long-term treatment aimed at maintaining quality of life (e.g., HIV infection, cystic fibrosis, or muscular dystrophy);
    3. Progressive conditions for which treatment is exclusively palliative after diagnosis (e.g., progressive metabolic disorders); or,
    4. Conditions involving severe, non-progressive disability, or causing extreme vulnerability to health complications (e.g., extreme prematurity, severe cerebral palsy with recurrent infection or difficult-to-control symptoms).

According to the Author

This bill ensures children face illnesses at home through palliative care. The author explains youth under 21 receiving palliative services are at risk of losing this care if they do not meet the narrower criteria set for adults. This bill allows youth in this situation to retain their eligibility for these benefits if they were deemed eligible for the services before age 21.

Arguments in Support

The Children's Specialty Care Coalition writes in support that this bill would improve the availability of pediatric palliative and hospice care services for children and youth who need it most.

Arguments in Opposition

There is no known opposition.

FISCAL COMMENTS

According to the Assembly Appropriations Committee:

Costs of an unknown amount, possibly hundreds of thousands of dollars annually, to DHCS to implement changes required by this bill (General Fund and federal funds). DHCS will need to revise policies, issue guidance, and pay for expanded coverage of palliative care and hospice care. The number of Medi-Cal beneficiaries who would be eligible for more services as a result of this bill is not known, but is expected to be relatively small.

VOTES

ASM HEALTH: 15-0-0

YES: Wood, Waldron, Aguiar-Curry, Arambula, Boerner Horvath, Wendy Carrillo, Flora, Vince Fong, Maienschein, McCarty, Joe Patterson, Rodriguez, Santiago, Villapudua, Weber

ASM APPROPRIATIONS: 15-0-1

YES: Holden, Megan Dahle, Bryan, Calderon, Wendy Carrillo, Dixon, Mike Fong, Hart, Lowenthal, Mathis, Papan, Pellerin, Sanchez, Weber, Ortega

ABS, ABST OR NV: Robert Rivas

UPDATED

VERSION: April 20, 2023

CONSULTANT: Lisa Murawski / HEALTH / (916) 319-2097 FN: 0000731

Date of Hearing: May 3, 2023

ASSEMBLY COMMITTEE ON APPROPRIATIONS

Chris Holden, Chair

ABPCA Bill Id:AB 847

Author:(Luz Rivas) – As Amended Ver:April 20, 2023

Urgency: No State Mandated Local Program: No Reimbursable: No

SUMMARY:

This bill extends eligibility for pediatric palliative care services for Medi-Cal enrollees who have been determined eligible for those services prior to 21 years of age, until 26 years of age. This bill also extends eligibility for pediatric hospice services for Medi-Cal enrollees who have been determined eligible for those services prior to 21 years of age, until 26 years of age.

FISCAL EFFECT:

Costs of an unknown amount, possibly hundreds of thousands of dollars annually, to the Department of Health Care Services (DHCS) to implement changes required by this bill (General Fund and federal funds). DHCS will need to revise policies, issue guidance, and pay for expanded coverage of palliative care and hospice care. The number of Medi-Cal beneficiaries who would be eligible for more services as a result of this bill is not known, but is expected to be relatively small.

COMMENTS:

1. Purpose. According to the author:

Children with terminal illnesses deserve the right to be in the presence of their loved ones as they face an illness. Oftentimes, ill children are left in a hospital room with limited family visits, surrounded by medical machinery, and looked after by medical staff far away from the comforts of their room, toys, and loved ones. AB 847 will ensure that children face illnesses at home through palliative care.

1. Background.
   
   Medi-Cal Palliative Care Benefit. The Medi-Cal palliative care benefit aims to relieve symptoms, pain, and stress of serious illness; improve quality of life for both the patient and family; and provide appropriate care for any age and any stage of serious illness, along with curative treatment. Someone with an advanced illness, whose health is in decline, who has started to rely on the hospital or emergency department to manage their condition, whose death within a year would not be unexpected based on clinical status, and who meets specified clinical criteria, would be eligible for the Medi-Cal palliative care benefit. DHCS eligibility criteria for palliative care apply to all enrollees, but children under 21 who do not meet the general eligibility criteria may become eligible for palliative care services according to more expansive criteria.

Pediatric Palliative Care. A child under 21 may be eligible to receive palliative care if they have a life-threatening diagnosis, including conditions for which curative treatment is possible, but may fail; conditions requiring intensive long-term treatment aimed at maintaining quality of life; progressive conditions for which treatment is exclusively palliative after diagnosis; conditions involving severe, non-progressive disability, or causing extreme vulnerability to health complications, such as extreme prematurity or severe cerebral palsy with recurrent infections.

Medi-Cal Pediatric Palliative Care Pilot. AB 1745 (Chan), Chapter 330, Statutes of 2006, created the Pediatric Palliative Care pilot program. DHCS implemented the pilot through a federal “1915(c)” waiver option, which allows states to explore provision of long-term care services in home- and community-based settings. The Pediatric Palliative Care waiver ended on December 31, 2018. To ensure continuity services for recipients who transitioned from the waiver, palliative care services were transitioned to the fee-for-service Medi-Cal system or the enrollee’s Medi-Cal managed care plan as of January 1, 2019.

Researchers from UCLA conducted an initial evaluation of the pediatric palliative care pilot project and reported reduced costs, largely through reduced spending on hospital care, which was replaced with less costly community-based services, and overall improved quality of life for patients and their families.

1. Prior Legislation.
   1. SB 1004 (Hernandez), Chapter 574, Statutes of 2014 established the Medi-Cal palliative care benefit described in 2), above, by requiring DHCS to consult with stakeholders and assist Medi-Cal managed care plans in delivering palliative care services in a manner cost-neutral to the General Fund (GF), to the extent practicable. SB 1004 also allowed licensed hospice agencies and appropriately licensed home health agencies to provide hospice care, subject to criteria developed by DHCS.
   2. AB 1745 (Chan), Chapter 330, Statutes of 2006, created the Pediatric Palliative Care pilot program described in 2), above.

Analysis Prepared by: Allegra Kim / APPR. / (916) 319-2081

Date of Hearing: April 18, 2023

ASSEMBLY COMMITTEE ON HEALTH

Jim Wood, Chair

ABPCA Bill Id:AB 847

Author:((Luz Rivas) – As Amended Ver:March 23, 2023

SUBJECT: Medi-Cal: pediatric palliative care services.

SUMMARY: Extends indefinitely the eligibility time period to receive Medi-Cal palliative care and hospice services for individuals determined to be eligible for these services prior to 21 years of age, and requires Medi-Cal managed care plans to pay for such services in a different county if the services are not available in the Medi-Cal managed care plan member’s home county. Specifically, this bill:

1. Makes an individual determined to be eligible to receive palliative care and hospice services as an Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit prior to 21 years of age eligible for those services after 21 years of age, if they are otherwise eligible.
   
2. Makes an individual determined to be eligible to receive palliative care and hospice services concurrently as curative treatment for their terminal illness prior to 21 years of age, eligible for those services after 21 years of age, if they are otherwise eligible.
3. Makes Medi-Cal managed care plans liable for payment for pediatric palliative and hospice care received in another county, if such care is unavailable in the individual’s county of residence.
   
4. Requires implementation only to the extent that any necessary federal waivers are obtained and federal financial participation is not otherwise jeopardized.

EXISTING LAW:

1. Establishes the Medi-Cal Program, administered by the Department of Health Care Services (DHCS), to provide comprehensive health benefits to low-income individuals who meet specified eligibility criteria. [Welfare and Institutions Code (WIC) § 14000 et seq.]
2. Establishes a schedule of benefits under the Medi-Cal program. [WIC § 14132]
3. Establishes EPSDT as a Medi-Cal benefit for any individual under 21 years of age is covered, consistent with the requirements of federal law, which establishes an expansive definition of medical necessity for services under EPSDT. [WIC § 14132(v)]

Pediatric Palliative Care Pilot [WIC § 14132.74]

1. Requires DHCS to develop a pediatric palliative care benefit as a pilot program to Medi-Cal beneficiaries under 21 years of age, to be implemented only to the extent that any necessary federal approvals are obtained and federal financial participation is available.
2. Requires DHCS, in consultation with interested stakeholders, to determine the medical conditions and prognoses that render a beneficiary eligible for the benefit.
3. Requires services under the program to be designed to meet the unique needs of children, and requires the program to include, among other things, hospice services to individuals whose conditions may result in death, regardless of the estimated length of the individual’s remaining period of life, as well as hospice service provided at the same time that curative treatment is available.
4. Establishes authorized service providers to include licensed hospice agencies and home health agencies licensed to provide hospice care, subject to criteria developed by DHCS.
5. Requires the pilot to be conducted for a period of time sufficient to evaluate the effectiveness and cost-effectiveness of the services, and requires an evaluation be provided to the Legislature.

Palliative Care Benefit [WIC § 14132.75]

1. Specifies the intent of the Legislature that palliative care include, but not be limited to, all of the following:
   1. Specialized medical care and emotional and spiritual support for people with serious advanced illnesses;
   2. Relief of symptoms, pain, and stress of serious illness;
   3. Improvement of quality of life for both the patient and family; and,
   4. Appropriate care for any age and for any stage of serious illness, along with curative treatment.
2. Requires DHCS, in consultation with interested stakeholders, to establish standards and provide technical assistance for Medi-Cal managed care plans to ensure delivery of palliative care services.
3. Establishes a palliative care benefit with features similar to the pilot program described in 4) through 6) above, except the benefits are not limited to pediatric populations and are defined to also include other services DHCS determines to be appropriate.

FISCAL EFFECT: Unknown. This bill has not yet been analyzed by a fiscal committee

COMMENTS:

1. PURPOSE OF THIS BILL. According to the author, this bill ensures children face illnesses at home through palliative care. The author explains youth under 21 receiving palliative services are at risk of losing this care if they do not meet the narrower criteria set for adults. This bill allows youth in this situation to retain their eligibility for these benefits if they were deemed eligible for the services before age 21. Additionally, the author explains, this bill makes Medi-Cal managed care plans accountable for payment for pediatric palliative care services to providers in any county a child can receive services from if the child lives in a county with no services available.
2. BACKGROUND.
   1. Palliative Care. According to the Center to Advance Palliative Care, palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment. As a Medi-Cal benefit, palliative care includes, but is not limited to, advance care planning, palliative care assessment and consultation, pain and symptom management, plan of care, care coordination, nursing and psychosocial services, discharge planning, physical or occupational therapy, and palliative care team services.
   2. Pediatric Palliative Care. The American Academy of Pediatrics recommended in 2000 that pediatric palliative care begin on the diagnosis of a child's life-threatening condition and continue for the duration of the disease, alongside curative care or life-saving treatment.
      
      AB 1745 (Chan), Chapter 330, Statutes of 2006, created the Pediatric Palliative Care pilot program. The pilot was implemented through a “1915(c)” waiver option (pursuant to 1915(c) of the federal Social Security Act), which allows states to explore provision of long-term care services in home- and community-based settings. The Pediatric Palliative Care waiver, which was originally approved by the Centers for Medicare & Medicaid Services in 2008, ended on December 31, 2018. To ensure continuity services for recipients who transitioned from the waiver, palliative care services were transitioned to the fee-for-service Medi-Cal system or the enrollee’s Medi-Cal managed care plan, as applicable, as of January 1, 2019.
      
   3. EPSDT. Pediatric palliative care services are covered under the EPSDT Medi-Cal benefit. EPSDT services are existing Medi-Cal benefits that provide comprehensive, preventive, diagnostic and treatment services to eligible participants under the age of 21, as required by federal law. Under the EPSDT benefit, states are required to provide any Medicaid-covered service listed within the categories of mandatory and optional services in the federal law, even services that are not designated as covered benefits by a state Medicaid program. Medi-Cal enrollees under 21 are eligible for EPSDT services when the services are determined to be medically necessary “to correct or ameliorate defects and physical and mental illnesses or conditions,” which creates a broad entitlement to services. In the context of the pediatric palliative care, this means the state offers more generous eligibility criteria to children under 21. Under federal requirements, a Medi-Cal enrollee under 21 may be eligible for palliative care and hospice services concurrently with curative care.
   4. Hospice. Hospice care is a Medi-Cal benefit that serves terminally ill members. It consists of interventions that focus primarily on pain and symptom management rather than a cure or the prolongation of life. To qualify for hospice care, a Medi-Cal member must have a life expectancy of six months or less.
   5. Medi-Cal Palliative Care Benefit. The Medi-Cal palliative care benefit is offered in both managed care and FFS delivery systems.
      1. Services. Medi-Cal makes no age distinction between the service codes billable as part of the palliative care benefit for children versus those billable for adults. Medi-Cal billing policy lists the covered services and requires different modifiers to be used to differentiate billing for palliative care for an adult versus for a child.
      2. Eligibility. DHCS establishes general eligibility criteria for palliative care that apply to all enrollees, but also notes children under 21 who do not meet the general eligibility criteria may become eligible for palliative care services according to a more expansive criteria, consistent with the provision of EPSDT services.
         
         The general criteria makes eligible, among other criteria, someone with an advanced illness whose health is in decline, who has started to rely on the hospital or emergency department to manage their condition, whose death within a year would not be unexpected based on clinical status, and who meets specified clinical criteria, including a diagnosis of congestive heart failure, Chronic Obstructive Pulmonary Disease, advanced cancer, or liver disease.
         
         For children under 21, the criteria are: (1) the family and/or legal guardian agree to the provision of pediatric palliative care services; and, (2) there is documentation of a life-threatening diagnosis, including but not limited to the following:
         1. Conditions for which curative treatment is possible, but may fail (e.g., advanced or progressive cancer or complex and severe congenital or acquired heart disease);
         2. Conditions requiring intensive long-term treatment aimed at maintaining quality of life (e.g., HIV infection, cystic fibrosis, or muscular dystrophy);
         3. Progressive conditions for which treatment is exclusively palliative after diagnosis (e.g., progressive metabolic disorders); or,
         4. Conditions involving severe, non-progressive disability, or causing extreme vulnerability to health complications (e.g., extreme prematurity, severe cerebral palsy with recurrent infection or difficult-to-control symptoms).
3. Medi-Cal Managed Care Plan Responsibility to Provide Covered Services. DHCS requires Medi-Cal managed care plans to have palliative care programs for members. Plans maintain a responsibility to pay for services, even if services are unavailable in the individual’s county of residence. DHCS’s current boilerplate managed care contract specifies, if a plan’s network is unable to provide necessary services covered under the contract to a particular member, the plan must adequately and timely cover these services out-of-network for the member, for as long as the entity is unable to provide them.
   
   DHCS is implementing a new managed care plan contract in 2024. The version of this new contract that was put out to bid, which will be effective in 2024, includes the following similar provisions:
   1. The plan must maintain an adequate network that includes adult and pediatric specialists within its network to ensure medically necessary specialty care is available; and,
   2. The plan must authorize and arrange for services from out-of-network providers when the provider type is unavailable within the network but available in an adjoining county. If there is no network provider in the adjoining county, the plan must authorize out-of-network services to the most appropriate provider as close to time or distance requirements as possible.

1. SUPPORT. The Children’s Specialty Care Coalition writes in support that this bill would improve the availability of pediatric palliative and hospice care services for children and youth who need it most.
2. PREVIOUS LEGISLATION.
   1. SB 1004 (Hernandez), Chapter 574, Statutes of 2014, establishes the Medi-Cal palliative care benefit.
   2. AB 1745 created the Pediatric Palliative Care pilot program.
3. AMENDMENTS. Following conversations with the Committee, the author has agreed to amend this bill as follows:
   1. Managed Care Provisions. As noted above, managed care plans are already required, per contract with DHCS, to provide medically necessary covered services, whether or not those services are offered in a particular county. Amendments will strike this requirement as duplicative of these existing contractual requirements.
   2. Time Limit on Pediatric Palliative Care. Although hospice care is generally provided for a short period at the end of life, palliative care is not necessarily associated with a terminal diagnosis. This means youth determined eligible before age 21 could theoretically retain eligibility for palliative care indefinitely. To minimize the policy concern of similarly situated adults being treated differently based on whether they were determined eligible for palliative care as of age 21, the provision extending eligibility for palliative care for youth determined eligible before 21 will be amended to be operative until age 26.
   3. Clarifying Amendment. Amendments will also simplify the bill language by removing the specific reference to youth who are receiving palliative care or hospice services concurrently with curative treatment for their terminal illness, and simply refer to all youth found eligible for hospice services or palliative care before 21 under the EPSDT benefit. Youth determined to be eligible to receive palliative care and hospice services concurrently as curative treatment for their terminal illness prior to 21 years of age are a subset of youth who are determined to be eligible to receive palliative care and hospice services as an EPSDT benefit prior to 21 years of age.

REGISTERED SUPPORT / OPPOSITION:

Support

Children’s Specialty Care Coalition

Opposition

None on file.

Analysis Prepared by: Lisa Murawski / HEALTH / (916) 319-2097