Quality of Life Surveys

1. Quality of Life Surveys

2. Open Doors and The Quality of Life Survey As Transition Specialists one of our primary goals is to assist people in transitioning from institutional settings to smaller, more personal, community settings. It is our belief that community living almost always leads to an improved quality of life.

3. QOL-Purpose • A tool to measure a person’s quality of life, both in the nursing home/ICF and once they have transitioned into the community. • Measures an individual’s quality of life in 7 domains: • Living situation • choice and control • access to personal care • respect and dignity • community integration and inclusion • over all life satisfaction • health status

4. Purpose Continued • A way for participants to voice their thoughts and feelings regarding their living situation and the services they are receiving • All surveys are sent to the Department of Health where the results are compiled, analyzed, and sent to the Center for Medicare and Medicaid Services • Helps NYS evaluate programs and services • It provides evidence that people generally have a higher quality of life when they are living in the community.

5. Confidential • All transition Specialists must sign a confidentiality pledge • The Confidentiality Pledge is in the Resource section of the database. • Must upload a signed copy into the “My Profile” section of the database

6. General Information • QOL surveys are completed for all Qualified Transitions • Signed Informed Consent • Medicaid • In NH/ICF 90+ days • Transitioned to a qualified setting • Voluntary • A blank copy of the QOL is located in the Resource Tab of the database, under TS Resources • Two types of surveys • Baseline • 11 Month Follow up

7. Baseline Surveys • Must be completed for all qualified transitions • Measures quality of life while in the institution. • Regardless of where it’s completed the baseline always pertains to life in the nursing home/ICF • Can be completed 90 days prior to transition or 14 days after. 11 Month Surveys- • Completed approximately 11 months after the participant has transitioned. • Measures quality of life after transitioning • Can be completed Up to 30 days before the due date or up to 90 days after. • 11 month surveys are completed even if the participant has be reinstitutionalized, re-admitted to a nursing home, or has moved to an unqualified setting. • Complete the entire survey • Pertains to wherever they are living at the time the survey is completed.

8. Who Completes the QOL • Participant- If at all possible the QOL should be completed with the participant. • Face to face • Quiet, private setting • Participant with assistance • Face to face • By Proxy- If the participant is unable, the QOL can be completed by someone who knows the individual and the situation. • 11 month surveys should be completed in the same way the baseline was, if possible.

9. When to use a proxy • If the participant is unable to complete the survey • Guardian’s request • If completed by proxy • Try to complete in person with the participant and the proxy • Guardian/family/advocate proxy can complete a QOL over the phone

10. ID/DD-OPWDD • OPWDD staff can assist participants • OPWDD staff can complete the survey by proxy if needed. • When using OPWDD staff as a proxy, surveys should be completed in person with the participant and the staff member.

11. TIPS • In person, face to face • Repeat, rephrase, or explain the questions as needed • Ask all the questions • Check “Don’t Know” or “Refused”, but do not leave blank • For Refused, Deceased, or Missed surveys you only need to complete the first 3 pages

12. Survey Dates • Completed or refused – use the date it was completed or refused • Missed surveys – In the database and on the survey, the date should be: • Baselines -15 days after the transition date • 11 month follow-up -91 days after the due date • Write MISSED next to the date

13. Potential Abuse and Neglect • Imminent Danger- or current ongoing situations • Report issues to management immediately • Call Nursing Home Hotline or Vulnerable Persons Central Registry (OPWDD) • Adult Protective Services (community) • Indicators of possible abuse and neglect noted on the QOL must be reported to the appropriate person • Nursing homes -(NHDP/management/Nursing Director) • TBI-NHTD Service Coordinator (11 month) surveys) • MLTC Care Manager (11 month Surveys) • OPWDD-Residence Manager, Care managers, ICF contact • Must be reported within 7 days. • Must actually speak with the person you are reporting the concerns to or have an email exchange you can copy and paste into the database. • If you have difficulty reaching someone or have any questions at all, contact NYAIL for guidance/assistance

14. Completing the Quality of Life Survey

17. Very Important For Baseline surveys PAGE 3 MUST match the Status Tab in the Database!!

30. Database QOL Tab * Do not upload QOLs into the database until you have confirmed that the participant has actually transitioned. They can be stored in the Document Section until the transition takes place

31. Keeping Track of when 11 month QOLs are Due • Database-Reports Tab • Regional Lead and Transition Specialist Report • Monthly or the entire year • Report # 9 QOLs Due • Ask for help with this on your Technical Assistance Call

32. Hot Lines DOH- Nursing Home Complaint Hotline 1-888-201-4563 OPWDD Vulnerable Persons Central Register (VPCR) 1-855-373-2122 Local Department of Social Services - Adult Protective Services Please alert NYAIL of any situations or issues If you ever feel that a participant is in immediate danger you should contact the appropriate hotline and notify NYAIL

33. Quality of Life DignityRespectHome Choice Community Hobbies Social InteractionsFriendsInclusion Leisure FamilyLife Experiences Physical NeedsHealth Personal Needs Pursuit of Happiness Personal Goals