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Library: Policy

340:100-5-34. Service for persons with Prader-Willi Syndrome (PWS)

Revised 9-15-20

(a) Legal basis.  Section 1020 of Title 56 of the Oklahoma Statutes authorizes the Oklahoma Department of Human Services (DHS) to provide community services for persons with PWS.

(b) Applicability.The rules in this Section apply to services provided through (DHS) and Developmental Disabilities Services (DDS) to persons with PWS through funds appropriated by the Oklahoma Legislature.

(c) General information.Services for persons with PWS are intended to meet the service recipients' specialized needs.DHS provides a monthly payment to the contracted-residential provider to:

(1) ensure each service recipient participates in regular recreation, leisure, and exercise activities at home and in the community;

(2) provide program coordination staff who serve no more than 12 service recipients within a 40-mile radius.The program coordinator must visit each home at least four times per month when the service recipient is present, and one of the visits must occur during night-time hours;

(3) assess the service recipient's progress and challenges related to activities of daily living and safety and provide a written summary to the case manager 30-calendar days prior to the annual Individual Plan (Plan) meeting;

(4) ensure program coordination staff attend an annual PWS conference and provide the direct service staff at least one hour per month of PWS-related training;

(5) ensure service recipients are provided specialized diets, per his or her Plan;

(6) ensure the service recipient's exercise program is implemented and he or she is provided access to exercise equipment and classes, per his or her Plan;

(7) work with the service recipient and his or her team to develop a plan to replace property damaged bya service recipient at no cost to DHS;

(8) assist service recipients to conduct safety and evacuation drills, per Oklahoma Administrative Code (OAC) 340:100-5-22.1; and

(9) ensure the service recipient's home is safe and secured, per his or her plans.

(d) Eligibility.To be eligible for PWS services, each person must:

(1) provide documentation from a licensed physician that confirms the diagnosis of PWS as evidenced by the deoxyribonucleic acid (DNA) Methylation Analysis of the PWS region of chromosome 15; or

(2) provide documentation that he or she has a condition closely related to PWS, except for mental illness.The DDS director or his or her designee may grant an exception to the confirmed PWS DNA Methylation analysis when the service recipient provides documentation containing objective evidence that he or she has a condition closely related to PWS.The condition:

(A) results in challenging behaviors that create serious risk of physical injury or harm to the service recipient;

(B) results in substantial impairments;

(C) is likely to continue indefinitely;

(D) requires treatment or services similar to those required for persons with PWS;

(E) requires strict control of access to food and limitation of daily caloric intake required for the individual's normal growth; and

(F) requires services and supports that are not available from another source;

(3) be receiving Home and Community Based Waiver Services (HCBS) or be on the Request for Waiver Services List, per OAC 317:40-1-1 and determined eligible for HCBS unless admitted to the program prior to July 1, 1997; and

(4) be 18 years of age.

(e) Waiting list.When resources are unavailable to offer services through the PWS program, applicant names are maintained on a statewide waiting list.

(1) The statewide waiting list is maintained by the DDS residential programs manager or his or her designee.

(2) The statewidewaiting list is maintained in chronological order based on the date of receipt of a written request for PWS services.

(3) The statewidewaiting list is administered by DDS uniformly throughout the state.

(4) An applicant is removed from the statewidewaiting list, when he or she:

(A) is determined ineligible for services;

(B) cannot be located by DDS;

(C) does not provide DHS-requested information or fails to respond;

(D) is not an Oklahoma resident at the requested Waiver approval date; or

(E) declines an offer of PWS services and indicates he or she does not want to remain on the statewide waiting list.

(5) When an applicant is offered PWS services but declines because he or she is not at least 18 years of age, the applicant maintains his or her position on the statewidewaiting list.

(f) Scope.PWS services reimbursement is provided at a DHS-approved rate within the program capacity determined by legislative appropriation.

(g) Service expectations.The contracted-residential provider ensures that:

(1) all applicable DHS and the Oklahoma Health Care Authority rules are met, including OAC:

(B) OAC 340:100-5-34;

(G) OAC 340:100-5-32; and

(2) each service recipient is weighed at least weekly;

(3) all food and money are safeguarded to ensure a proper diet and health maintenance;

(4) transportation to and from vocational activities, community outings, and medical appointments is provided, per the service recipient's Plan;

(5) staff implements periodic room, clothing, and baggage searches as necessary to ensure that food and money are not present, per the service recipient's Plan; and

(6) the staffing ratio is appropriate to ensure the service recipient's safety, per his or her Plan.Staff is trained to meet the PWS service recipient's needs.

(h) Room and board.Each service recipient is responsible for room and board, per OAC 340:100-3-4.

(1) When the home is owned or leased by the service recipient or his or her family or guardian, the contracted-residential provider develops a financial agreement for payment of household expenses by the service recipient, per OAC 340:100-5-22.1.

(2) When the home is owned or leased by the contracted-residential provider, the contracted-residential provider may charge a room and board payment of all but $100 per month of the service recipient's income, up to a maximum of 90 percent of the current Social Security Supplemental income rate.In these circumstances the contracted-residential provider must comply with OAC 340:100-6.

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