UPDATED

Palliative Care: Bereavement Services and Health Home Care Management Service

  • Update also available in Portable Document Format (PDF)

For Health Home Care Managers (HHCM), C-YES, & Children's Home Community Based Services (HCBS) Providers

December 2021

Agenda

Amendment and Palliative Care Service Update

  • Caregivers and family members of a child with a terminal diagnosis are in need of additional services and supports
  • Effective December 1, 2021, new services are available under the Children's Waiver to support these families and caregivers
    1. Palliative Care Bereavement Counseling for up to six (6) months after the passing of the enrolled participant, and
    2. Health Home care management services for one (1) additional month following the passing of the Children's Waiver enrolled participant.

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  • Based upon feedback from providers and care management agencies regarding the September 22, 2021; Bereavement Webinar, NYS worked to clarify the services and how the services can be delivered. Changes with CMS approval have been made and is outlined in this webinar and policy.
  • Thank you for your continued feedback and solution focused ideas!

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Bereavement Services - Criteria and Choice

Palliative Care - Clarification of Bereavement Services

Clarification of the Additional Services of:
  1. Palliative Care Bereavement Counseling up to six (6) months after the passing of the enrolled participant, and
  2. Health Home care management services for one (1) additional month following the passing of the Children's Waiver enrolled participant.
Criteria for Eligibility
  • Child must be enrolled in the Children's Waiver
  • Child has a terminal or life-threatening illness
  • Caregivers/Family members are in need of additional services and supports
  • Services must be added to the Plan of Care (POC) before the child passes away

⮚ For children/youth enrolled in the Children's Wavier with chronic conditions/medically fragile, who may suddenly pass away, Health Home care managers or C-YES should work with the family to link them to community services and services covered by the family's health insurance, i.e., support groups, counseling, etc.

Family Choice of the Type of Services

There are two (2) Bereavement service options available for families of child/youth with a terminal or a life-threatening illness. Families may receive both services, so long as they are not duplicative.

  1. State Plan Hospice Services: Bereavement counseling services are available for those participants in receipt of hospice care through a hospice provider under the State Plan. Bereavement counseling services are included in hospice for those participants who are receiving services with a hospice care provider, including after the participant's passing.
  2. Children's Waiver Palliative Care Bereavement Services: Palliative Care Bereavement Counseling provides continued support after the passing of the participant. It must be added to the POC before the child passes away.

For information regarding Bereavement Hospice Services under the Medicaid State Plan authority, please refer to: Hospice Program Policy Guidelines

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Palliative Care Bereavement Overview

Palliative Care: Bereavement Service Overview

  • Bereavement Services provide support for child/youth and their families to cope with grief related to the child/youth's end-of-life experience.
  • Children/youth with life-threatening illnesses, and their families, cope with grief and loss in a variety of ways and may need various kinds of support over time, including counseling, support groups, and other services.
  • These services can be added to the POC at any time after a child/youth is diagnosed with a terminal or life- threatening illness.

Bereavement Service Update

  • When an enrolled child/youth passes away, they are disenrolled from Medicaid, and the Medicaid services typically end because payment of the service is predicated on the child's Medicaid enrollment.
  • To address the need for families to receive continued support after the passing of their child, Bereavement Counseling is now available for up to six (6) months after the passing of the enrolled child/youth.
  • In addition to Bereavement Counseling, the family can also choose to receive Health Home care management services for one (1) additional month following the passing of the enrolled child/youth, even if the family does not want to receive Bereavement Counseling.

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Bereavement Counseling Component

Delivering Bereavement Counseling

Palliative Care Bereavement Counseling can be delivered:

  1. To the participant with a terminal or life-threatening illness and the participant's identified family members prior to the passing of the participant.

    AND/OR
  2. To the participant's identified family after the passing of participant, if the HCBS providers service plan and the care managers POC denotes the service as outlined in policy.

Documenting Bereavement Service

  • To receive Palliative Care Bereavement Counseling after the passing of the eligible and enrolled participant, the family must initiate the service prior to the participant's passing.
  • A determination of the needed services and request by the family must be made as part of the HCBS - service plan for the provider to bill the service, which includes the counseling review and counseling for up to six (6) months after the passing of the participant.
  • The service plan must be updated to include the service and the begin date of service must occur prior to the participant's passing.
  • Claims must be submitted within 30 days of the participant's passing.
  • Additionally, the six (6) months of counseling must be written into the child/youth's Health Home or Children and Youth Evaluation Services' (C-YES) POC.
  • The Palliative Care HCBS Provider will develop the Bereavement Counseling review and service plan.

Additional Supports Outside of the Children's Waiver

  • If the family decides after their child/youth passes that they want to receive Bereavement Counseling, but the service nor review determination was not added to the POC prior to the child/youth's passing, then the Care Manager should utilize other options to help connect the family to supports.
  • Additional supports outside of Children's Waiver include (but may not be limited to):
    1. Hospice (if the child was receiving Hospice care prior to their passing)
    2. Counseling through the family's health insurance coverage (including Medicaid)
    3. Support Groups
    4. Other Community resources

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Determination of Bereavement Service Needs

Bereavement Counseling Review

  • The Palliative Care Bereavement provider must conduct an initial bereavement review to determine the needs of the participant and their family while considering the social, spiritual, and cultural factors that may impact their ability to cope with the child/youth's terminal illness.
  • This review should be incorporated into the provider's service plan that outlines the frequency, scope, and duration of counseling to be provided and that service plan should be incorporated into the HCBS care management POC.
  • For families to receive Bereavement Services after the passing of their child/youth, the service must be included in the POC prior to the child/youth's passing.

Please refer to the HCBS Service Plan under the 1915c Children's Waiverguidance for additional information.

  • To enhance engagement with, and support for, the family, care managers should have 1-2 documented discussions to identify the needs of the family, even if they ultimately choose not to use the Bereavement Counseling service.
  • The conversations should include care management roles as well as incorporating the risk review for Bereavement Counseling by a licensed mental health practitioner.
  • These needs may not be apparent prior to experiencing a loss, but they should be incorporated into the POC and billed in compliance with the billing guidance.
  • Bereavement counseling service plans should be updated regularly and incorporated into the final POC.
  • The Care Manager should ensure that the provider implements the service plan.

Service Plan and Plan of Care Examples

Service Plan Example:
  1. Palliative Care Bereavement counseling will be provided bi-weekly to (name of the participant) with family involvement to develop coping strategies regarding the terminal diagnosis of (name of the participant). Continued counseling for the family will be reviewed and determine regarding bereavement.
  2. Palliative Care Bereavement counseling will be provided bi-weekly for up to six months to the participant's family regarding grief and loss of their child and to develop coping strategies.
Plan of Care Example:
  1. Palliative Care Bereavement counseling will be provided bi-weekly for the participant for 3 months with family involvement to address coping strategies regarding the terminal diagnosis.
  2. Palliative Care Bereavement counseling will be provided bi-weekly for up to six months to the participant's

Determination of Child/Youth's Bereavement Counseling Needs

The participant is determined to have a terminal illness or a life-threatening illness and the participant and/or family members have at least one of the following:

  1. a degree of anxiety and depressive responses and triggers of such responses
  2. other affective responses such as guilt and helplessness
  3. somatic concerns and dysregulation
  4. psychiatric symptoms including orientation and mental status, PTSD (post-traumatic stress disorder) in both full-blown and partial forms, and suicidal ideation
  5. self-esteem issues
  6. effects on the individual's ability to work or perform major life tasks
  7. effects on the management of family relationships, including the relationship to spouse or partner, to other children, and to the extended family

Bereavement Counseling should incorporate guidance that accounts for:

  • the nature and degree of involvement in interpersonal relationships outside the family.
  • the meaning framework or structure in which the bereaved is embedded and its current power.
  • the degree to which the bereaved is able to invest emotional energy in life tasks and the type of life tasks that are engaged.

Assessment of the Family's Counseling Needs

For family members, the relationship to the terminally ill child/youth and the bereavement needs are reviewed in relation to:

  1. the ability to cope with the terminal diagnosis and management of treatment
  2. the degree of preoccupation with the diagnosis and the illness
  3. the degree of guilt, helplessness, or ability to manage the illness
  4. the extent in which the illness is impacting the functioning, activities, and daily life needs for the siblings, caregivers, and other family members

For family members, the relationship to the deceased participant and the bereavement needs are reviewed in relation to:

  1. the degree of preoccupation with memories and thoughts of the deceased
  2. the extent to which the description of the deceased is characterized by an inability or unwillingness to express the personal feelings brought about by the death
  3. the degree of idealization of the deceased
  4. the report of psychological conflict or contradictions in the relationship
  5. the degree and type of positive affect and emotion
  6. the degree and type of negative emotion toward the deceased
  7. the degree of closeness or distance from the relationship and experience of the deceased
  8. the affective experience when discussing the deceased (e.g., a parent who might say, "I always feel guilty thinking about how my son died")
  9. the presence of previously described grief phases of shock, seeking reminders of the deceased, disorganization, and restoration of a coherent life flow the manner in which the deceased is memorialized both publicly and within the family

Social, Spiritual, and Cultural Factors

Social, spiritual, and cultural factors that may impact a family member or other individual's ability to cope with the participant's death may include, but are not limited to:

  • History of previous losses
  • Religion
  • Family problems
  • Community
  • Financial and/or legal concerns
  • Communication issues
  • Drug and alcohol abuse
  • Health concerns
  • Mental health issues
  • Presence or absence of a support system
  • Feelings of despair, anger, guilt, or abandonment

Note: These issues may not be readily apparent during the initial bereavement counseling review but must be considered and should be incorporated into the provider's service plan.

The Elements of Comprehensive Psychological & Emotional Care

  • Evaluation of the participant's psychological status and identification of psychological symptoms or disorders.
  • Provision of appropriate psychotherapy, psychotropic medications, or behavioral interventions as an integral part of the participant's overall care.
  • Advice for the participant's physician, parents, and others on additional strategies or steps that they can take to manage or minimize emotional distress.
  • Evaluation of the participant's parents and siblings (and sometimes other family members) for psychological symptoms.
  • Referral as appropriate to support groups for ill participant, healthy siblings and parents that allow them to share experiences in living with serious illness.
  • Bereavement support for the family after the participant's death.

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Care Coordination Component: Medical Notifications and Related Tasks

Health Home Care Management

  • In addition to (but not contingent upon) waiver Bereavement Counseling services, the family may receive one month of Health Home Care Management services after the child's passing.
  • Care Management is intended to assist with provider notifications and managing discontinuation of services after a child's passing.
    • Medically complex participants with a terminal illness often have 10 to 15 medical specialists, 2 to 3 Durable Medical Equipment (DME) and supply vendors, 1 or 2 different pharmacies or specialty pharmacies, private duty nurses and/or multiple agencies, and various school contacts
    • The family also needs to notify the Local Department of Social Services (LDSS), the insurance carrier, and/or Medicaid Managed Care Plan (MMCP)
  • The POC, developed by the HHCM, should include the medical notifications and other related tasks that need to occur in the 30 days after the participant passes.

Care Management Activities

Care Management activities may include but are not limited to:
  • Contacting all DME providers to determine whether the equipment is owned or rented
    • If owned, (if parent chooses) arrange removal from home
    • If rented, arrange for pick-up by vendors
    • If borrowed, arrange for item[s] to be returned to owner
  • Arranging for all disposable supplies to be donated and transported
  • Notifying all nursing / home care providers, including Fiscal Intermediary agencies
  • Notifying all physicians and pharmacies
  • Contacting school district / Committee on Special Education (CSE) team, Early Intervention Program (EIP) and/or therapy providers
  • Notifying LDSS, MMCP, and insurance carrier [if applicable]
  • Notifying Office for People with Developmental Disabilities (OPWDD) [if applicable]
  • Removing Environmental Modifications
  • Assisting with locating funding for final expenses
  • Providing linkage to bereavement groups and/or sibling support groups as well as ensuring that Bereavement Counseling continues under the waiver/hospice benefit

Please refer to the DME Manual for additional information.

Plan of Care

  • The care management POC must indicate the specific services that will be provided (including post-mortem bereavement counseling and assistance with medical notifications), individuals who would receive the services, and the frequency, scope, and duration of the services.
  • The POC should be reviewed and updated up until the participant's death, following subsequent bereavement review findings and changes in the family's needs.
  • The Care Manager should ensure that any post-mortem bereavement counseling is delivered in a manner consistent with the POC in effect at the time of the participant's death.
  • A POC change reflecting post-mortem services must reflect the actual needs of the family and actual services that the provider will deliver to the family within the scope of the HCBS definition as outlined in this policy.

Plan of Care Examples

Plan of Care Examples:
  1. Palliative Care Bereavement Services will be provided by the Health Home care manager for one month including tasks to assist the family due to the passing of the participant such as medical notifications.
  2. Palliative Care Bereavement counseling will be provided bi-weekly for up to six months to the participant's family due to the passing of the participant.

✤ Regardless of the participant's family utilizing the Palliative Care six (6) months of Bereavement counseling, the one month of additional Health Home care management services can occur and be paid.

Billing Component

Overview

  • Palliative Care - Bereavement Counseling services must be provided by a professional with experience or education in grief and loss counseling, per the Children's HCBS Manual.
  • Assistance with medical notifications and other related tasks must be provided by a Health Home or C-YES Care Manager.
  • Billable services must be documented in the Service Plan inclusive of the bereavement risk review, and in the POC.

Claims

  1. Claims for payment for Bereavement Counseling services provided to family members after the participant's death must be submitted with a date of service prior to and within 30 days of the participant's passing.
    • A one-time claim should be submitted by the Palliative Care - Bereavement HCBS provider as documented in the chart provided, and the rate includes the Bereavement risk review and up to six (6) months of counseling after the passing of the child/youth
  2. Claims for payment for Health Home care coordination provided to the family after the participant's passing must be dated prior to and submitted within 30 days of the participant's passing.
    • The separate Health Home upstate/downstate rate code based upon acuity (in the attached chart) is allowed for an additional unit of service to be billed along with the regular Health Home PMPM within the month of the participant's passing

Rate Codes

Service Rate Code Procedure Code Rate Unit Measure Unit Limit
Palliative Care Bereavement Services 7952 - Assess/Counseling 96156 Upstate $2,175.01
Downstate $2,439.41		 Bereavement Risk Assessment and up to six (6) months of Bereavement counseling 1 unit/calendar year Per member
Health Home Care Management Based Upon Acuity 7946 - HH Upstate Low
7947 - HH Upstate Med
7948 - HH Upstate High
7949 - HH Downstate Low
7950 - HH Downstate Med
7951 - HH Downstate High		 96156 Health Home PMPM Care Coordination for one (1) month  

*Rates can be billed once loaded

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Q & A

Appendix

Resources and Questions

  • HHCMs and HH CMAs should first talk with their Lead Health Home regarding questions and issues they may have
  • Questions, comments or feedback on Health Homes Serving Children to: hhsc@health.ny.gov or contact the Health Home Program at the Department of Health at 518.473.5569
  • Specific Questions/Comments BH.Transition@health.ny.gov
  • Subscribe to the HH Listserv

NYS DOH Website

Find guidance, policies, forms, webinars, and more on the NYS DOH 1915c Children's Waiver webpage.

Find guidance, policies, forms, webinars, and more

Department of Health Complaints

  • Enrollees and providers may file a complaint regarding managed care plans to DOH
  • When filing:
    • Identify plan and enrollee
    • Provide all documents from/to plan
    • Medical record not necessary
  • Issues not within DOH jurisdiction may be referred
  • DOH is unable to arbitrate or resolve contractual disputes in the absence of a specific governing law
  • File Prompt Pay complaints with Department of Financial Services

Referral Form Instructions

  • The Children and Youth Evaluation Service (C-YES) accepts referrals from individuals and providers including a parent, wider family member, doctor, therapist, school guidance counselor, CBOs and others:
  • Individuals and families should call C-YES so that we can send you a Referral Form and a pre-paid return envelope in the mail right away! You can mail back the form in the envelope at no cost to you. Call C-YES at 1- 833-333-CYES (1-833-333-2937). TTY: 1-888-329-1541
  • Providers and Organizations with secure email protocols can download the Referral Form below. Return the form to: CYESREFERRAL@MAXIMUS.COM. Be sure to include the child/youth's name and contact information.
  • C-YES Referral Form

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