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PENNSYLVANIA DEPARTMENT OF HUMAN SERVICES OFFICE OF DEVELOPMENTAL PROGRAMS HOME AND COMMUNITY-BASED INTELLECTUAL DISABILITY AND AUTISM SERVICES CHAPTER 6100 REGULATIONS WORK GROUP March 4, 2015, 10:00 AM 3:00 PM Holiday Inn East, 4751 Lindle Road, Harrisburg, PA 17111 Meeting Notes These notes are intended to summarize the issues and comments discussed at the meeting; they do not represent the Department s position, nor do they represent a consensus of the work group members. Prepared by: Karen E. Kroh, Regulatory Consultant, Office of Developmental Programs Date Prepared: March 5, 2015 NOTES: REVIEW OF DRAFT REGULATORY LANGUAGE: Provider Monitoring - 6100.42 ( 51.24): 1. Do not specify AE; use designee. 2. Timelines from Ch. 51 are missing for CAP and DCAP. 3. Include other county management duties in addition to this chapter see Bulletin #6000-88-08. 4. Include timelines for submission of the CAP. 5. DHS or AE must approve the CAP. Regulatory Waivers - 6100.43 ( 51.34): 1. Under (d), add with permission of the individual ; send to the family as well. 2. Under (e), explain to the family and advocates as well. 3. Clarify what happens if an individual objects to the waiver. 4. 30 days is too short to find an alternate service, if the individual choses to change providers. 5. 10 days for an individual to review and comment is too short. 6. Must communicate with an individual who is nonverbal. 7. Advance notice is sometimes not given by the individual for fear of retaliation. 8. Specify the timeline by which DHS must respond for waiver requests necessary to protect an individual s health and safety. 9. Shorten the timelines for providers and individuals if there is a health and safety risk. 10. Allow expedited processing through a group family participating process (rather than by paper mail). 11. Allow more than 30 days if a provider change is required. 12. Throughout this section, include participation by the individual and his/her team; same comments for 49. 13. Any timeline beyond 30 days is too long. 14. In (c), pull references to effective/expiration dates out and make a separate section. 15. Add rights to the exceptions (for which a waiver is not permitted). 16. DHS should receive a copy of all individual and family comments as part of the waiver request. 17. If a waiver is granted that results in the reduction or suspension of services, is a fair hearing required? 18. Clarify the process for a waiver renewal; some suggest that the process be identical to the initial process; others suggest an abbreviated renewal process. 19. Provider should notify all new individuals of any applicable existing waiver that may affect him/her. 20. Allow waiver of rights such as free and full access to food, if based on a health and safety risk. ISP - 6100.225-226 ( 51.28-29): 1

1. ISP language should inspire! 2. Change name to person-centered plan. 3. Remove TSM; does not apply here. 4. SC does not write the entire plan; SC coordinates while others develop portions of the ISP. 5. Team effort is addressed in other docs such as the waiver application. 6. Cannot bill for ISP development until it is approved. 7. Specify the criteria for an update of the plan. 8. Move (a) under 225. 9. Life planning is the basis for the ISP. 10. Specify timelines for initial development. 11. Do not regulate timelines of the ISP; measure by substance of the plan, not by due dates. 12. Must revise the ISP timely as needs change. 13. Include family medical history as it relates to the health of the individual (e.g. history of breast cancer, diabetes, etc.). 14. Do not include family medical history unless the individual agrees. 15. Move 225(7) closer to the top of the content list. 16. Section (a) assessments should be plural as there are multiple types of assessments; include various types of assessments. 17. Subsection (c)(1) add choice of provider as well as setting. 18. Subsection(c)(5) - overly prescriptive; timelines, days, dates and frequency vary based on individual choices and needs; allow flexibility for all parts of the ISP including staff supervision levels, day program participation, etc.); identity legitimate options. 19. Subsection (c)(5) affects cost and quality of life issues. 20. Subsection (c)(5) - do not allow flexibility in the regulations, rather clarify in ODP guidance documents; allow flexibility only for responsible providers, as some will use as an excuse to reduce needed staffing. 21. Subsection (c) (5) is overly prescriptive; permit exceptions re: choice, illness, vacation, etc. 22. Subsection (c) (5) allow flexibility for only certain services; do not mandate day of week (T, TH); measure outcomes not frequency. 23. Subsection (c)(5) allows for plenty of flexibility. Clarify further in interpretative guidelines. 24. CMS requires (c)(5), but ISP can be designed to permit flexibility, rather specifying the days of the week. 25. Choice of setting perpetuates facility-based programs. 26. ISP is the largest cost driver in the system; build in flexibility. 27. Subsection (c)(2) remove clinical as this is not a medical model. 28. The ISP is based on person-centered planning. 29. Improve of the capability of the SC to implement person-centered planning (training for the SC). 30. Remove setting from ISP content. 31. Remove clinical and support in subsection (c)(2). 32. ISP implementation varies greatly from county to county. 33. Do not prioritize individual need over individual choice. Coercion does not result in better outcomes. 34. Must know the number of units authorized in order to measure waiver compliance. 35. Some individuals prefer specificity in his/her schedule. 36. Add opportunities for community involvement. 37. Incorporate functional ability into strengths and preferences. 38. Add information for families as to how to best support the individual in the family home; family should be part of the team if the individual lives at home. 39. Some individuals do not want his/her family to be informed or involved. 40. ISP should not permit the family to keep the person at home and limit choice. 41. Cannot fund whatever a person wants. 42. Clarify who has access to case notes. Individual should decide who has access. 43. Incorporate all items re: ISP in the ISP section of this chapter both process and content. ISP implementation - 6100.227 ( 51.28-29): 2

1. With approval of the individual, family should receive a copy. 2. Establish expedited timelines for the ISP revision. Documentation of service delivery - 6100.228 ( 51.28-29): 1. From a CMS audit standpoint, state requirements must match the federal audit requirements on units and encounter reports. 2. Specify documentation and counting required by CMS to prevent audit exceptions. 3. Document that a service was delivered as related to a specific goal. 4. Do not document each staff contact and activity; takes away from delivery of services. 5. Specific MA rules already apply. 6. Billing codes are grouped; clarify the documentation required for each type of service. 7. Provide a model form, list required components, but do not mandate a specific form. COMMENTS ON NEW TOPICS: Quality management - 51.25: Write regulations that Inspire! Define grievances. Change person to position in (d)(5). Include CMS as a minimum; build in added best practices. Change QM to Quality Improvement; design plan on evidence based strategies to include process, performance and management. QM encompasses planning, assurance and improvement. Present QM plan to the provider s Board of Directors. Consider developing quality ratings of providers. Review NASD core indicators of quality. Subsection (c)(1) is sufficient; do not specify the components of the plan. Subsection (d) is not necessary; overly specific and detailed. Collect systemic performance and quality data across the state. Rights and choices - 51.17a (statement of policy): Add a process if a provider attempts to restrict a right. Rights cannot be waived. Include civil rights. Include right specified in the licensing regulations that are not facility-based. Include choices per the CMS final rule. Clarify that a court may restrict rights due to criminal activity or life safety risk to self or others. Add abandonment to the term abuse. If the individual lives with his/her family there is no right to privacy in the bedroom or bath. Rights differ for facility-based v. non-facility based services. Use Ch. 6400 as the basis for this chapter; all individuals have the same fundamental rights even if he/she is living in a family home. Add right to security of possessions. Add right to choose and accept risks. Add right to refuse services. Consider the meaning of informed consent per the CMS final rule. Meaningful informed consent means the rights have been explained and understood by the individual. Many of the rights and choices addressed in the CMS final rule are already in Ch. 6400 and 6500. Expansion of rights may increase costs. Align this section with the CMS final rule. Write rights in a positive light. 3

Providers spend time checking a checklist. Overregulation does not equate with quality. Rights are non-negotiable. Right to choose activities in a communal setting is necessarily restrictive; activities are based on the will of the group. Family should be informed if there is a life safety risk. An individual decides if the family is to be informed and involved. Clarify who can exercise an individual s rights: individual, advocate, friend, family? Transition - 6100.31: There are great inconsistencies in the county implementation of this section. Subsection (a) an individual should be required to give reasonable notice when he/she decides to move. Subsection (c) change from willing to able. A 30-day notice is too long; require a shorter time period. A 30-day notice is too short; there is not sufficient time to find an alternate provider; change to require a 60- day notice. If a provider is not able to provide a service due to a health and safety risk, 30 days is too long; allow for shorter notice if there are emergency needs. See PCH regulations (2600.228) re: allowable reasons for discharge against an individual s will. Allow transition based on: financial service not authorized, significant change of need, impact on housemates safety and well-being. Address CMS final rule on leases in this section. Individual should not remain in a program that cannot safely serve him/her; change should occur asap. Incident management - 51.17-19: This section must mesh with APS regs. There must be a single point of contact for APS, Licensing and HCSIS reporting; report only once. There should be no duplication of incident investigations between Licensing, APS and ODP. Clarify methods of communication to include nonverbal communication methods. Incident management should apply equally to ID and Autism. Train all staffing levels re: incident reporting. Should report only prescription medication errors, not OTC. Should report even OTC medication errors. Families should be notified of incidents, if the individual consents. Some incidents are self-correcting based on seriousness. Timeframe to report should vary based on types of incidents. Change (g)(6) from disciplinary to corrective actions. SSW must report to common law employer in subsection (o). Incident management in family homes is overwhelming; normal family arguments should not be reported. Disagree, some family arguments are indicators of systemic inappropriate behaviors, intimidation and abuse. If family arguments are reported, the family may refuse services. Redact the report before sending to families. Act 70 requires independent, conflict-free investigations; if APS investigates, APS will use an independent investigator. Require a human rights committee as in Ch. 6400. Clarify a crisis event as used in autism. Look at what the family is doing and whether it is effective; do not judge. Conduct clinical analysis prior to reporting family abuse. 4

There is a subtle difference between acceptable behaviors within a familial culture and abuse; this is a very fine line. DHS should err on the side of over reporting and investigation to assess and detect any pattern of abusive behaviors. 5