Phenylketonuria (pronounced feh-nuhl-kee-tuh-nur-ee-uh), or PKU, is a condition in which the body builds up toxins while processing proteins that can cause serious health problems or developmental disabilities. The bodies of typical people produce enzymes that break these toxins down, so they cause no harm. People with PKU do not produce these enzymes.

Refer to Mayo Clinic: Phenylketonuria (PKU).

A person with this condition still needs a minimum amount of protein every day for their body to function properly. There is specialized formula that will provide a person with the minimum amount of protein needed.  The PKU benefit only pays for the specialized formula.

If the person with PKU is eligible for SoonerCare, Medicaid will cover the formula and the PKU benefit isn’t needed.

Eligibility

Per policy 340, the following eligibility requirements must be met by the applicant.

Individual must:

• Be under age 21
• Be a resident of Oklahoma
• Provide verification of a diagnosis of Phenylketonuria (PKU)

There are no income/resource limits for this program. The person just needs to meet the above criteria.

Certification

When medical eligibility has been determined for the PKU Program based on the eligibility criteria above, certify the Medical Section only for PKU using the following process.

Case Info Tab

If the person with PKU is a minor child, the name of a parent or guardian needs to go in the “Guardian, Substitute Payee, etc.” block. This is the only way the parent’s name will be sent to OHCA, so the parent can talk to the SoonerCare Helpline on their child’s behalf.

Household Tab

Add the person with PKU to the “Phenylketonuria Individual” benefit. If the person with PKU is a minor child, the payee coding should be “Applicant with Guardian”.

If the individual with PKU is a minor, at least one parent will need to be added to the case as the Payee/Head of Household. That parent will be coded as “income and resources are not considered for benefit computation-individual not included”.

NOTE: “PK” will show on the CM in IMS as shown here. The person will PKU will show PK/A (added to the PKU benefit). The parent or guardian, if there is one, will be coded as PK/N (income/resources not considered – not included in benefit for the PKU benefit).

Medical General Tab

Certify the Medical-General tab as usual for ABD-related benefits. The Cert Date should be for the beginning of the month with the Cert Period of 12 months. The Date of Last Redetermination should match the Cert Date.

Categorical Relationship Indicator = Not Title XIX Eligible: Crippled Children’s Program or PKU Program – Child Diagnosed with Phenylketonuria and has Medical Necessity for Food Supplements.

NOTE: “CCU” will appear in IMS Block F190 (Categorical Relationship), shown here.

NOTE: “CCU” will appear in IMS Block F190 (Categorical Relationship), shown here.

Medical Financial Tab

Medical Application Reason = Medical Benefit Not Otherwise Listed.

NOTE: “S” will show up in IMS Block D60, shown here.

Reviews

At the annual review, workers needs to only verify if the individual is still under age 21 (per FACS/IMS) and residing in Oklahoma. There is no cure for PKU, so the diagnosis doesn’t need to be verified again.

Note: If additional information happens to be included on the review form (other than address and signature date) which indicates that the person may now qualify for regular Medicaid the worker should contact the family to explore this with them to see if they are interested in applying.

Case Closure

The case is closed when:

• The worker cannot verify if the individual still resides in Oklahoma.
• The first day of the month following the month the individual turns age 21. FOR EXAMPLE: The individual turns 21 on 10/28/19. The case should be closed with an effective date of 11/01/19.