The Rhode Island Organ Transplant Fund

15.1.1Authority

A.R.I. Gen. Laws § 42-11-13 establishes the legal basis for the Rhode Island Organ Transplant Fund, hereinafter referred to as "the fund", to help defray any expenses of human organ transplants incurred by Rhode Island residents and their families.

B.The statute directs the Director of the Department of Human Services to promulgate rules and regulations pursuant to the Administrative Procedures Act, (R.I. Gen. Laws §?42-35-1 et seq.), and requires the director or the director’s designee to confer with the General Treasurer prior to issuing such rules.

C.The general treasurer is the financial steward for the fund, overseeing its investments and disbursements, and is specifically responsible for investing and reinvesting the fund in accordance with R.I. Gen. Laws § 35-10-2, which governs state investments practices. All earnings, including interest, must be deposited into the fund and used solely for payments of benefits and other purposes consistent with the fund’s statutory mandate.

15.1.2Scope and Purpose

A.The following provisions define the scope, purpose and foundational operating principles of the Rhode Island Organ Transplant Fund.

1.The Rhode Island Organ Transplant Fund is established to assist Rhode Island residents and their families in covering non-reimbursed expenses associated with organ transplants.

2.The fund shall be used to help defray any expenses of organ transplantation incurred by Rhode Island residents and their families. It is not intended to cover the entire cost of the transplant.

3.The fund shall consist of all revenues received pursuant to R.I. Gen. Laws § 44-30-2.5, together with any gifts, grants, donations from public and private sources, and all interest or other income derived from the investment or reinvestment of fund assets in accordance with R.I. Gen. Laws §?35-10-2. All revenues and earnings shall be deposited into the fund and shall not be expended except for the purposes set forth herein.

4.The fund shall operate prospectively provided, however, a Rhode Island resident on maintenance drugs as set forth in R.I. Gen. Laws § 42-11-13(c) may apply for disbursement after the principal of the fund equals fifteen thousand dollars ($15,000.00).

5.Disbursement from the fund and the fund itself are not entitlement programs. The fund shall not incur a deficit.

6.Disbursement of funds from the fund shall be made by the general treasurer upon receipt by him or her of properly validated applications from the department of human services.

7.Disbursement approvals are subject to the requirements set forth herein and the availability of funds within the Rhode Island Organ Transplant Fund.

A.These Regulations hereby adopt and incorporate 45 C.F.R. Parts 80 and 84 (2025) by reference, not including any further editions or amendments thereof and only to the extent that the provisions therein are not inconsistent with these Regulations.

A.For the purposes of this Part, the following definitions apply unless otherwise noted:

1."Agency" means the Rhode Island Department of Human Services (DHS), including any board, commission or officer of the department.

2."Covered Services" means those expenses included within R.I. Gen. Laws § 42-11-13.

3"Director" means the Director of the Rhode Island Department of Human Services.

4."Executive Office of Health and Human Services" or "EOHHS " means the State agency as defined in R.I. Gen. Laws § 42-7.2-1 et seq.

5."Family member" means a parent, spouse, guardian, or next-of-kin of the organ transplant recipient.

6."Medically Necessary Service" means a medical, surgical, or other service required for the prevention, diagnosis, cure, or treatment of a health-related condition including any such services that are necessary to prevent or slow a decremental change in either medical or mental health status.

7."Non-Reimbursed Costs" means those covered services not paid for by any insurer or other third party.

8."The Fund" means the Rhode Island Organ Transplant Fund under R.I. Gen. Laws § 42-11-13.

9."Validated" or "Validated Applications" means those applications for the fund, which have been approved by the Agency after receipt of all required documentation.

15.4.1Residency Requirements

A.The transplant recipient must be a resident of the State of Rhode Island prior to the date of the transplant operation. Verification of residency may be established through documentation consistent with DHS policy under 218-RICR-10-00-1.5, including but not limited to:

1.A valid Rhode Island driver's license or state ID;

2.Lease agreement or rent receipts;

3.Utility bills showing Rhode Island address;

4.Rhode Island personal Income tax return; or,

5.School records, medical bills, or bank statements with a Rhode Island address.

15.4.2Financial Requirements

A.Financial eligibility verification requires applicants to submit a copy of the most recent Rhode Island Income Tax Return, demonstrating that the Adjusted Gross Income of the transplant recipient, or parents if a minor or dependent, does not exceed seven hundred percent (700%) of the federal poverty level (FPL) to qualify for fund benefits.

B.In order to be considered eligible for funding, the transplant recipient must be covered under a health insurance plan which specifically includes coverage for organ transplant expenses related to the recipient's particular condition. After the recipient's insurer has made payment, any resulting non-reimbursed costs, such as plan deductibles and co-insurance, will be considered for reimbursement as a covered service in addition to the services identified in § 15.4 of this Part. Documentation from the recipient's health insurance plan that identifies the services, items, or benefits that are covered or excluded under that plan will be required as proof of such non-reimbursed costs.

C.The approval for all related expenses incurred by family members remain contingent exclusively upon verification of their relationship to the transplant recipient, in addition to the recipient meeting the residency and financial eligibility requirements of the program.

D.DHS reserves the right to request any and all relevant medical documentation from the attending physician and/or transplant center as needed in order to reach an eligibility determination.

A.Based on available funding, the department seeks to disburse funds to as many applicants as feasible. Therefore, the lifetime benefit per transplant recipient shall be limited to fifteen thousand dollars ($15,000.00).

B.The organ transplants eligible for consideration under the fund shall include only the following:

1.Kidney;

2.Cornea;

3.Bone marrow;

4.Heart;

5.Liver;

6.Heart/lung;

7.Small intestine;

8.Pancreas; and

9.Other organ transplant operations as may be designated by the director after consulting with medical advisory staff or consultants; and provided that any such transplant operation is determined by the director or his or her designee to be medically necessary.

C.Covered services under the fund are limited to non-reimbursed costs directly related to eligible organ transplant procedures. For these covered services, customers shall submit documented, non-reimbursed voucher invoices and receipts directly to the Department for the following:

1.Transplant-related medical services are covered to the same extent as RI Medicaid, and all related costs are reimbursed at the fee-for-service Medicaid rate.

2.Plan deductibles and co-insurance paid at the amount charged by the insurance company once the recipient's insurer has made payment.

3.All drugs prescribed which are related to organ transplant maintenance, payable at the rate of fifty percent (50%) of the average wholesale price or fifty percent (50%) of non-reimbursed costs, whichever is less.

4.Out of state living expenses of eligible family members for a period of not more than sixty (60) days at the time of the organ transplant operation. Reimbursement is limited to the per diem rate allowed state employees for accommodations and sustenance as of the date of a validated application.

5.Payment of COBRA premiums, up to six (6) months.

D.It is the intent of the fund to, whenever possible, reimburse covered services rendered in the State of Rhode Island. DHS may require an evaluation setting forth the reasons why the covered services cannot be delivered in Rhode Island. If an evaluation is requested, an application for funding will not be validated until the process is completed.

A.Organ transplant recipients should file an application as soon as they or a family member have incurred or know that they will incur non-reimbursed costs related to a human organ transplant covered by the fund.

B.Applicants can apply for the program by phone, email, mail, or in person.

Phone: RI Department of Human Services (DHS) at 1-855-697-4347

Email:[email protected].

Mail:Completed applications and all required documentation must be submitted to Rhode Island DHS – Medicaid & LTSS Unit P.O. Box 8709, Cranston, RI 02920.

In person: At a local DHS office.

C.Validated applications and related bills for covered services shall be processed by order of receipt on a first come first served basis. In the event that available funds are exhausted, all validated applications not yet funded shall be placed on a waiting list and shall receive prospective approval upon the next availability of funds.

A.All services are provided in accordance with Title VI of the Civil Rights Act of 1964 (42 U.S.C. § 2000d et seq.) and Section 504 of the Rehabilitation Act of 1973, as amended (29 U.S.C. § 794), and the U.S. Department of Health and Human Services incorporated in § 15.2 of this Part. The Executive Office of Health and Human Services (EOHHS) and the Department of Human Services (DHS) do not discriminate on the basis of race, color, national origin, disability, political beliefs, age, religion, or gender in acceptance for or provision of services, employment or treatment, in its education and other program activities. Under other provisions of applicable law, EOHHS and DHS do not discriminate on the basis of sexual orientation, gender identity or expression.

A.If an individual is dissatisfied with a decision by DHS relative to their eligibility for or disbursement from the Organ Transplant Fund, they have a right to request and receive a hearing.

B.The appeals and hearing process is handled as indicated in Appeals Process and Procedures for EOHHS Agencies and Programs (EOHHS) (210-RICR-10-05-2).

A.If any provision in any section of this Rule or the application thereof to any person or circumstances is held invalid, its invalidity does not affect other provisions or applications of the Rule which can be given effect without the invalid provision or application, and to this end the provisions of this Rule are declared to be severable.