Section 663.10  Definitions

 

For the purpose of this Part, the following shall be the accepted definitions of the terms used in this Part:

 

"Act" means the Sickle Cell Prevention, Care, and Treatment Program Act [410 ILCS 460].

 

"Department" or "DPH" means the Illinois Department of Public Health or its designee.

 

"Director" means Director of the Illinois Department of Public Health.

 

"Hemoglobinopathies" means rare inborn disorders that impair the red blood cells’ ability to carry oxygen to the body’s organs and tissues.

 

"Fund" means the Sickle Cell Chronic Disease Fund as established by the Act.

 

"Funding period" means the time (usually 12 months coinciding with the Department's fiscal year) during which money is to be spent by award recipients.

 

"Program" means the Sickle Cell Prevention, Care, and Treatment Program. (Section 131-5 of the Act)

 

"Sickle cell disease" (SCD) and "sickling disorder" means a rare inborn disorder that impairs the red blood cells' ability to carry oxygen to the body's organs and tissues. A change in the shape of the red blood cells may occur, at times resembling a sickle shape.

 

"Sickle cell trait" (SCT) and "sickle trait" means the heritable change in the hemoglobin gene that is associated with sickle cell disease.

 

Section 663.20  Incorporated and Referenced Materials

 

The following materials are incorporated or referenced in this Part:

 

a)                  Illinois Statutes

 

1)         Sickle Cell Prevention, Care, and Treatment Act [410 ILCS 460]

 

2)                  Grant Accountability and Transparency Act [30 ILCS 708]

 

3)                  Illinois Grant Funds Recovery Act [30 ILCS 705]

 

b)         State of Illinois Administrative Rules

 

1)                  Grant Accountability and Transparency Act (44 Ill. Adm. Code 7000)

 

2)                  Practice and Procedure in Administrative Hearings (77 Ill. Adm. Code 100)

SUBPART B: SICKLE CELL PREVENTION, CARE, AND TREATMENT ACT GRANTS

 

Section 663.100  Eligibility for Grant Program Award for Sickle Cell Prevention, Care, and Treatment and for Sickle Cell Education and Outreach

 

a)         The Department shall set application criteria and standards of eligibility for groups or organizations who apply for grant funds under the program. (Section 131-15 of the Act)

 

b)         The highest priority for grants shall be given (Section 131-15 of the Act):

 

1)         To established sickle cell disease community-based organizations throughout Illinois; and

 

2)         To the establishment of sickle cell disease centers in underserved areas that have a higher population of sickle cell disease patients.

 

3)         Organizations that are eligible to apply for grants include:

 

A)        Community based organizations in Illinois with at least 2 years’ experience serving people with sickle cell disease and their families;

 

B)        Community based organizations in Illinois with medical specialists and allied health professionals providing sickle disease and sickle trait care, management, education, training, services, and/or resources and aiming to implement, expand, or improve an interdisciplinary approach dedicated to care for people in Illinois with sickle cell disease and sickle trait through, for example:

 

i)          Comprehensive care clinics;

 

ii)         Telehealth services;

 

iii)        Infusion service; and

 

iv)        Acute and chronic pain management programs.

 

C)        Community based organizations in Illinois whose program goals, objectives, and/or scope of work are demonstrably aligned with published national guidelines and evidence-based practice for acute and chronic care management from sources such as the American Society of Hematology, the National Heart Lung and Blood Institute of the National Institutes of Health, the American College of Emergency Physicians, the International Association of Sickle Cell Nurses and Professional Associates, and others.

 

D)        Community based organizations in Illinois who have three or more years’ experience collaborating with the DPH in networking activities to improve knowledge, awareness, and coordination of services for people in Illinois with sickle cell disease and sickle trait.

 

c)         Grant applicants must register with the State of Illinois, to complete a prequalification process, and be determined qualified per requirements of the Grant Accountability and Transparency Act, Illinois Grant Funds Recovery Act, and all other applicable law and Codes.

 

Section 663.110  Grant Requirements

 

a)         Grants shall be awarded for the purpose of providing for the prevention, care, and treatment of sickle cell disease. (Section 131-10 of the Act)

 

b)         Qualified applicants must submit a grant application to the Department on the Uniform Grant Application Form (see https://gata.illinois.gov/content/dam/soi/en/web/gata/documents/resource-library/gata-forms1/Application.pdf. (Section 4(a) of the Illinois Grant Funds Recovery Act)

 

1)         The Department will provide written application instructions to potential applicants in an electronic format that will be stated in the Notice of Funding Opportunity.

 

2)         Completed applications shall be returned to the Department electronically as directed.

 

3)         All applicants shall comply with the requirements set forth in the application.

 

c)         Grant recipients shall comply with the reimbursement procedures and requirements as outlined in the grant agreement. (See https://gata.illinois.gov/content/dam/soi/en/web/gata/documents/resource-library/uga/GATA%20UGA%20FY24%20FINAL_accessible.pdf).

 

Section 663.120  Allowable Uses of Grant Funds and Reimbursement Procedures and Requirements

 

a)         All grant funds shall be used for the purpose of prevention, care, and treatment of sickle cell disease or for educational programs concerning the disease. (Section 131-5 of the Act)

 

b)         The Department shall determine the maximum amount available for each grant awarded based upon the funds available in the Sickle Cell Chronic Disease Fund;

 

c)         The Department shall determine policies for the expiration and renewal of grants which follow federal, State, and Departmental rules and guidelines;

 

d)         Grant funds shall be used only for administering, operating and maintaining a project or service in accordance with the requirements of the grant agreement, including but not limited to one or more of the following purposes (Section 131-15 of the Act):

 

1)         Assisting in the development and expansion of care for the treatment of people affected with sickle cell disease, particularly adults, including, but not limited to:

 

A)        Self-administered care;

 

B)        Preventive care;

 

C)        Home care, or

 

D)        Other evidence-based medical procedures and techniques designed to provide maximum control over sickling episodes typical in a person with sickle cell disease.

 

2)         Increasing access to health care for people with sickle cell disease;

 

3)         Establishing additional sickle cell disease infusion centers;

 

4)         Increasing access to mental health resources and pain management therapies for people with sickle cell disease;

 

5)         Providing counseling about sickle cell disease, sickle cell trait, and the characteristics, symptoms, and treatment of sickle cell disease, free of charge, to any person. Counseling may consist of any of the following:

 

A)        Genetic counseling for a person who tests positive for sickle cell trait;

 

B)        Psychosocial counseling for a person who tests positive for sickle cell disease, including any of the following:

 

i)          Social service counseling;

 

ii)         Psychological counseling; and

 

iii)        Psychiatric counseling.

 

C)        Sickle cell medical and behavioral health services and counseling must be administered by persons who have completed training programs approved by the Department.

 

6)         To develop a sickle cell disease educational and outreach grants program (Section 131-15 of the Act)

 

A)        Grant funds will support educational programs that strengthen and enhance the access to health services for people with sickle cell disease and sickle cell trait described in this Part.

 

B)        Grant funds will further support the development of educational programs that include the dissemination of educational materials, tools, and resources, concerning sickle cell disease and sickle cell trait, to (Section 131-15 of the Act):

 

i)          Medical residents;

 

ii)         Immigrants;

 

iii)        Schools and universities;

 

iv)        Community health workers; and

 

v)         Other audiences and entities, as needed to promote enhanced access to health care and services for people with sickle cell disease and sickle cell trait and their families.

 

C)        The Department may contract with external entities to implement the sickle cell disease and sickle cell trait education and outreach grants programs in Illinois. (Section 131-15 of the Act) Such entities must be:

 

i)          a unit of local government or an organization that is in good standing with the State of Illinois;

 

ii)         established as having provided sickle cell disease or sickle cell trait services for a period of two years to individuals or families in Illinois who are or have been impacted by these conditions; and

 

iii)        physically located in Illinois.

 

e)         Indirect costs may be allowable when eligible under the Grant Accountability and Transparency Act. (See Section 7000.420 of 44 Ill. Adm. Code 7000)

 

f)         Grantee shall comply with reimbursement procedures and requirements as outlined in the grant agreement. The standard grant agreement template can be found at https://gata.illinois.gov/content/dam/soi/en/web/gata/documents/resource-library/uga/GATA%20UGA%20FY24%20FINAL_accessible.pdf.

 

Section 663.130  Suspension or Termination of Grant Award

 

a)         The Department has the authority to suspend funding or terminate the grant agreement for failure to comply with the Act, this Part, or the grant agreement.

 

b)         The grant agreement may be suspended or terminated for any of the reasons specified in the grant agreement, and in accordance with the procedures outlined in the grant agreement.

 

c)         The grant agreement may be terminated immediately, without penalty of further payment required, if the General Assembly fails to appropriate or otherwise make available sufficient funds for the award, or if sufficient funds are not available in the Fund.

 

d)         The grantee is subject to the provisions outlined in 44 Ill. Adm. Code 7000.80 and 7000.260 (Grantee Compliance Enforcement System; Illinois Stop Payment List).

SUBPART C: SICKLE CELL STATEWIDE IMPACT AND SURVEILLANCE PROGRAM

 

Section 663.200  Sickle Cell Statewide Impact and Surveillance Program

 

The Department will develop and establish the Illinois Sickle Cell Impact Surveillance System (ISCISS) to assess and monitor the impact of sickling disorders on Illinois residents. ISCISS activities will include assessing the impact and unmet needs related to sickling disorders, as well as additional hemoglobinopathies which may impact the health and wellbeing of affected persons.

 

a)         Through ISCISS, IDPH shall perform a study of the prevalence, impact, and needs of individuals with sickle cell disease and sickle cell trait in Illinois. On a biennial basis, the study shall include, but not be limited to, all of the following (Section 131-25 of the Act):

 

1)         The prevalence, by geographic location, of people diagnosed with sickle cell disease in Illinois.

 

2)         The prevalence, by geographic location, of people with sickle cell trait in Illinois;

 

A)        The availability and affordability of screening services for sickle cell trait in Illinois;

 

B)        The location and capacity for the treatment of sickle cell disease and sickle cell trait including:

 

i)          Treatment centers;

 

ii)         Clinics;

 

iii)        Community-based social service organizations; and

 

iv)        Medical specialists.

 

C)        The unmet medical, psychological, and social needs of people in Illinois with sickle cell disease;

 

D)        The underserved areas of Illinois for the treatment of sickle cell disease, and

 

E)        Recommendations for actions to address any shortcomings in the State identified under this Section.

 

F)         The prevalence, impact, and unmet needs of people with additional sickling disorders and additional hemoglobinopathies which may impact the health and wellbeing of people in Illinois.

 

3)         In establishing the ISCISS, and developing, implementing, and conducting program activities, the Department will collaborate with multiple partners and stakeholders, including, but not limited to (Section 131-25 of the Act):

 

A)        The Center for Minority Health Services;

 

B)        Health care providers that treat people with sickle cell disease;

 

C)        People with sickle cell disease;

 

D)        Representatives of community-based organizations that serve people with sickle cell disease; and

 

E)        The DPH Newborn Screening Program.

 

4)         The Department shall develop a report of its findings before July 1, 2024, and biennially thereafter. The Department shall submit the report to the General Assembly.