Staley Implementation Group

Suttle Lake Camp & Retreat Center

July 21-22, 2005

Present: Tim Kral, Mary Lee Fay, Bill Lynch, Lynn Greenwood, JoAnne Fuhrman, Joe Carroll, Tom Giles, Mike Maley, Patricia Hildebrand, Robin Mouser, Larry Deal, Dan Peccia, Bev Herrin, Marcie Ingledue, Margaret Theisen, Pam Ring, Judy Cunio, Charlene Dean, Marcie Alvarez, Cindy Helvington, Cynthia Owens, Kristie Holmquist, Kathy Holmquist, Scott, Pehlman, Kathryn Weit, Arlene Jones, Tara Asai (day 2 only).

Note takers: Arlene Jones, Larry Deal, and Margaret Theisen

Facilitator: Bill Lynch

Welcome, Introductions, Announcements

• Announcements:

Cindy Helvington has brought a copy of the White papers (on disc) that SAAL has created. Respectful language bill was passed.

• Membership:

A small group was asked to review membership categories and individuals in each category.

[Charlene, Tom, Patricia, Margaret, Lynn, MaryLee, Tim, Pam, Kathryn]

Review retreat Purpose, Agenda, Proposed Outcomes and SIG Ground Rules

· Outcomes

Facilitator asked the group for review of the desired outcomes for this SIG Retreat.

It is the Planning Committee’s hope that this retreat will be a safe place for discussion, recognizing that, bottom line, all stakeholders want to see Self-Directed Support Service succeed and flourish.

Desired outcomes:

Clarification of the SIG role and purpose

Changes to structure and operations of SIG as needed to support role and purpose

Agreement on new renewed set of assumptions about Support Services for Adults

4-5 priority issues for next two years.

Orientation of new members and integration of new members was added to the desired outcomes

· Ground rules for the SIG meetings were reviewed:

• No cell phones;
• Raise hand, Go through the facilitator before speaking;
• As a member of a stakeholder group, you are representing more than just yourself;
• Agree that there maybe disagreements;
• Self-manage and be on time;
• No side conversations—unless new people need explanations, otherwise find another place for conversation to occur;
• “No pissing and whining”

Self-Directed Support Services for Adults: History, Successes and Oregon’s National Stature

• Systems Change Success Stories
• Charlene Dean: now a part of a caring loving community. She is the life of the community where she lives. Brokerage staff helped her get settled and comes to check up on her;
• Judy Cunio: the initial development of self-directed supports included people with disabilities as equal partners in reviewing the brokerage applications and the selection;
• Joe Carroll: a family he knows where the daughter had broadening experiences and community activities because of the brokerage;
• Pam Ring: her son has been able to change his plan as his life needs changed—very flexible and fluid;
• Bev Herrin: an individual in RCO who instead of staying at home, now is involved within her community and has a job. We need to be sharing these success stories;
• Dan Peccia: an individual who wanted to be an artist—because brokerage was involved, VR was more conducive to collaborating;
• Tim Kral : the evolution of the brokerage reflects a dream of services outside of the traditional case management system; entitlement helped protect some of the rest of the system;
• Kathy Holmquist: getting VR, customers, and brokerage working all together in a seamless flow—6 weeks to get a job for this particular individual (SDRI)—
• Dan Peccia: VR person is actually stationed once a week in the brokerage—this an outcome of a SIG workgroup with VR;
• Lynn Greenwood: Success of SDS turning into brokerage and development of FAB brokerage. System change became a reality. The collaborations have enriched the whole community;
• Margaret Theisen: new generation of leaders in young PAs associated with their brokerage; new presence in some communities, better linkage between individuals with DD getting access to what is out there (outreach)—outcome of the brokerage advisory group in South Lane County; individual in crisis with multiple issues and brokerage being able to support the individual (“way we treat the one is the way we treat the many”)
• Mary Lee Fay—universal comments across the state indicates the uniformity of the brokerages as far as ability to deliver; to be sustainable they have to be accountable (which the brokerages have been)—legislative fiscal has said that the brokerages and Staley have great credibility;
• Kathryn Weit: we do not have to explain Staley over and over again to legislators;
• Mike Maley: created a solid foundation; independent brokerage system is an important feature; integration of self-determination was effective; responded to the challenges of people with difficult issues; developed a new model with enough detail – we can continue to analyze; haven’t been encumbered by filters and the different stakeholders are still communicating with each other;
• Marcie Alvarez: brokerages have given the customers the opportunity to advocate and participate actively and be listened to; empowered both families and self advocates;
• Bill Lynch: the SIG group is also a success story in itself, with the bringing together of the different stakeholder groups—not that we can solve all problems or each issue.
• Kathryn: people have been taken off of the waitlist
• Cindy Helvington: as an individual who was on the SIG in the beginning and had a chance to step away and come back again, the SIG has come a long ways from what the initial meeting was.

Review Background Material

• “The Roadmap to Support Services” document has been printed.

Who should this be distributed to?

Recommendation:

o Make available through County, brokerage, and high school transition programs

o Develop an appendix or addendums for some other sections. May want to include SAAL White Papers. Family / Self Advocate group will discuss this.

o Group was asked to review and see what other information should be included.

o Should be put on OAC, State webpages. I

o If we need to reprint, see where it was found to be most useful at the county or brokerage— survey 6-8 months later.

o Tom recommended that the addendums that are available on websites to be produced in hard copy.

o Would be good if we could put a post card in to track who gets the document and to receive survey.

o Workgroup will be created to develop a distribution plan including getting information out to schools to let know of availability. Cynthia will reconvene the workgroup along with a self-advocate, please let Cynthia know if you would like to be on the group.

• Assumptions in Settlement Agreements and Staley Implementation Group Assumptions —2 documents which had been sent electronically to the group:
• The documents are for background information and will be referenced in other conversations.

• Model budget for brokerages
• Mike presented computation of brokerage model budget for DD 148 . Minimum size was 350 with max of 700. The model budget from initial timeframe (an allocation formula), which takes care of all categories. All annual amounts, which are prorated. No assumptions are included. This is the administrative or operative, not client dollars;
• Built on case management model that was in effect at the time of brokerage initiation (amt/case manager and amt/PA), and added Executive Director (.5 FTE at 350 and 1.0 FTE at 700) and bookkeeper (1 FTE @ 350 and 2.0 FTE at 700), and fiscal intermediary (FI) amounts. Other amounts in between are pro rated. 700 case load would be 1 PA:48 customers. These are model budgets to allocate money. How the actual money is spent depends on how the brokerage board determines the money is actually budgeted.
• FI was explained—2 pieces. Two categories: (1) vendor payments, as contracting with a service, (2) employer/employee of customers—most dollars were supposed to be for this;
• Totals below and salaries, OPE, clerical, etc follows the model of the case management structure at the time and FI is added in.
• Data on Implementation Status
• Settlement agreement with modification, has target numbers line8 rowB; line 8 800 derived before the freeze and didn’t take into acct that people were leaving the brokerage—so backfill—so at 1787 Down to line 33 current waitlist, target 1000, addition of 100 to meet disagreement in first biennium so that we would meet expectations.
• Numbers are actually what are in the brokerages, which filters out SILP, etc;
• 22 & 23 would be strictly Staley waitlist individuals
• Brokerage focus areas—result of joint planning meeting with brokerage directors
• Is a pool of ideas that were put together;

• State focus areas – most immediate are in bold

• Other drivers: rate restructuring, Xpress, Medicaid
• Rate restructuring— will start with comprehensive services but will impact support services—what services are individuals receiving in comprehensive services and how rates are developed and how are they applied now and in the future
• It will be a model for support services: how to charge for services; long process and complex with the need for additional funds. State applied for a grant from Medicaid to hire staff and independent contractors to assist with going through the process—anticipate starting in fall 2005 and will be a 3 year process.
• Xpress—new payment system; in order to get Medicaid, need to meet Medicaid requirements; starting in August 2005, with comprehensive areas; Xpress is a web-based system; brokerage services targeted for next year (effects on brokerage systems next year—so undertaking preparatory work at this point in time); FI services could become a streamlined process;
• 1.5 years from now before see the benefits;
• Medicaid rewrite--$10 billion decrease in federal funds, so looking at where to cut over the next 5 years;
• Accountability and what Medicaid is paying for;
• New Medicaid waivers—offices are writing new waiver requirements—some flexibility, some of Oregon’s ideas are being used in the new waiver; accountability and QA demands from CMS are increasing—CMS staff have been meeting with regions for accountability;
• Medicaid/Medicare (MMA)— current system for getting medications will change for some customers depending on their situations; with this change, brokerage will have to explain choices to customers; complex and time consuming.

SIG Role & Structure

• Who owns it?
• SIG was initially created by the DD Coalition to be a place to bring together key stakeholders. The vision was to create a table where all stakeholders were equal;
• The Staley Settlement Agreement speaks to the need to ensure meaningful involvement of all stakeholders in all levels of policy development.
• Involvement by all members, with an agenda which was not determined by the State or by the families/self-advocates, providers etc;
• Where all stakeholders could talk at the same table;
• Advisory in nature with information and input to State and State following the advice;
• Place were “values bump into the reality;”
• Keep eye on what is happening to people;
• The SIG is owned by the stakeholders, not the State;
• In the beginning we were developing the structure; shifted to monitoring implementation;

• Some of the challenges we are experiencing:
• It is felt that the SIG looks at a lot of information, but actions and outcomes have not seemed to have occurred;
• Does the group feel “meaningfully” involved?
• Discussion regarding how one perception could be feeling not “meaningfully” involved when there is no closing of the loop. In other words, when the SIG gives input on a policy and then policy is implemented by the State, how exactly has the SIG influenced the policy decisions?
• PC20 was used as an example (“more reported than discussed”)
• PC20 was discussed more with the plaintiffs, but not necessarily exhaustively

discussed within this group.

o Having only anecdotal information without following up with information/data to back up the broader implications. Anecdotal information is important to understand what is happening at the “people” level.

• Not following up on issues and the parking lot
• When a new issue comes up brokerages are the ones often asked to gather the data to respond. Workload issue. Need to know how this fits into the big picture and how is the information going to be used.
• Side discussion: regarding the need for the SIG to take on transportation as a main point to explore in future meetings.
• SIG doesn’t always get information brought back and doesn’t know what is happening. Don’t track the ripple effect of decisions.
• Need a process for bringing issues to the SIG. How should questions generated by a stakeholder group be handled?
• There doesn’t seem to be continuity from one meeting to the next.
• How has role changed over time?
• Does our structure support our current role?
• If not, what changes do we make in membership, meeting frequency, agenda, access to data?
• Mike suggested looking at the most fundamental issues (prioritizing) and allowing for some level of consistency from meeting to meeting
• Lynn brought up the idea of having PA representation and Case Manager representation as an additional constituent group on the SIG.
• Tracking decisions and impacts. Need to utilize more small groups.

• Margaret cautioned an approach from smaller constituency groups carrying the SIG’s POV (or perceived POV).

• Discussion ensued over whether or not a Personal Agent should be on the SIG.
• Discussion regarding the heavier representation by providers and loss of individuals representing families. Cynthia suggested the need to give support to families to ensure they can continue to come to the meetings. Same for the self-advocates. Suggested the need for consistency in supports.
• Mike suggested having each group bring the folks they feel are most appropriate to represent their groups (in other words, Counties could bring in CMs, Support Specialist, etc – it’s up to each group).
• Meeting frequency: Discussion that going to monthly meetings is costly. Council can cover Council members. Frequency tabled until later.
• Support to families is already being covered by Brokerages. Internally, some Brokerages have set aside a line item in the budget for transportation. Brokerages would share the cost.
• Arc of Oregon can offer expense reimbursement and mileage.
• Remember that we are not here just to represent specific positions.
• The SIG group does not necessarily write policies, but certainly have a place at the table with influencing policies.

• Need to track policy and its impact all the way to the delivery level – this would be an ideal way for the group to work.

Agreements and Recommendations:

• The SIG is owned by the stakeholders.

• All groups have equal representation. Everyone at the table is equal.

• Subcommittees / workgroups should include members of each stakeholder group.
• Stakeholder groups select their own participants and are responsible for maintaining their groups (replacing members, recruiting members, etc)
• Counties and brokerages will decide how to bring the voice of Personal Agents and Support Specialists to the table.

• Minutes should be reviewed and approved before posting.
• At the end of each meeting, the SIG will make the agenda for the next meeting (with flexibility to allow malleability).
• The SIG will review and attempt to address the issues on “the parking lot” on a regular basis.
• Agendas and materials will be sent out as early as possible (understanding that sometimes, due to time sensitivity of issues, this will not always be at least two weeks ahead of time)
• The SIG will establish a process for tracking decisions and impacts.
• Other SIG stakeholder groups will support the participation of stakeholder representatives who currently do not have agency support for transportation and other out of pocket costs for attending the meetings.
• Meeting agendas will structure in the use of small groups whenever possible.

Stakeholder Presentations: Issues/Concerns

· Families/Self-Advocates (Group offered handout to all members)

1. Training

o Families as employers and the accompanying liabilities

o High school transition process/Role of PA/How can we support transition?

o Families entering the brokerage (what to expect)

o Families as paid providers

o Rural capacity issues

o Training needs for those working with families

· Brokerages (Group offered handout to all members)

1. Fiscal Intermediary Services/Employer and Employee Concerns

o Brokerages appreciate the training with Flanagan/State’s support re: FI

o Impact of bill processing on Brokerages – this is a large issue because PAs are processing a large number of bills. Impact of PC20 – all Brokerages will be sharing data in 6 – 9 months on what the impact is.

o Still concerned about this issue regarding our education of customers in Employer roles. Need to lessen the risk.

o Need more guidance / statewide consistency on some of the employment issues.

· Caseload Sizes

o Brokerages are seriously concerned about 1:45 ratio and claim as a group that they are not workable numbers

o Time Study to follow. When last time study was completed, PA’s were spend 1hr 45 mins on customers daily. Personal Agents sharing that things are more reactive versus proactive. PA’s feel like what they are doing is just administering plans and cannot spend time to develop resources for customers and building community capacities.

· Providers (Tim Kral presented for agencies, Kathy Holmquist for Independent Contractor’s, Patricia Hildebrand for DE’s)

o Agencies: Sustainability – given the current structure, large providers may just move away from Support Services because of the cost to operate.

o Agencies: Quality – Are we able to offer quality in the system that exists? Is a group social event quality? Is sheltered employment quality? Suggestion for rate restructuring.

o Agencies: Relationships between Providers and Brokerages – Can the provider system be more involved in the planning? Participation in development of ISPs. Believe that it would produce a higher quality plan

o Independent Providers: Quality is a theme again. Many families do not feel like they do not have quality providers (esp. with Job Development). More training would be necessary for Independent Contractors.

o Independent Providers: Discussed the difference between rates at Brokerages versus Voc Rehab. The average Job Developer is usually paid $32k to $38k. Can’t break even.

o Independent Providers: Independent Contractors have had issues with no-call/no-shows. (Group recommended the inclusion of Independent Contractors with Absenteeism Policy that only Provider Agencies currently enjoy, but the State chose not to include them).

o Domestic Employee: Capacity of providers is a current issue.

· Local Government / County (Lynn Greenwood presented)

o Integration of the Comp and Support Services systems and the need for mutual support on each side of the system. Looking at where the “touch points” are and how those connections are made and made better.

o SILP Transfer and Comp 300 – How will this all go? How can we make it go as smoothly as possible?

o High School Transition – how can we improve the process?

o Paperwork for Personal Agents is too much, several folks mentioned.

o Sustainability – people coming into the counties is outnumbering the number of folks going into the Brokerage.

· State (Marilee Faye and Mike Maley presented)

o Role of Customer as Employer – State recognizes this is an issue.

o SILP & Comp 300 are critical transfers. (SILP built around a model of 8 hours per week of support).

o Capacity issue – initially, the State identified 11 Brokerages, funded 10 and are down to 9. How do we go about identifying new Brokerages? Need input from stakeholders.

o Data and Accountability. (Marylee mentioned last year’s audit and the need for cleaning up data.)

o Mike Maley referenced the 8 areas the State and Brokerage directors identified (referenced handout)

o Mike Maley referenced the “post-rollout” of the settlement. Benefit levels to be revisited (COLA), rate ranges, etc. Holistic relationship is part of the post-Staley rollup.

o Mike Maley referenced the need for a forum for broad policy discussions. For example, the role of families within an individual’s self-determination, use of private resources. This is a national issue, not just Oregon/Support Services specific. Need to deal with the capital “P” policy issues. Mike suggests that the SIG is a great environment for working with these things.

o Implementation Givens

SILP -

Comp 300

Medicaid Changes

New Brokerage

Roll Out Numbers

Data/Accountability

Prioritizing Key Issues:

· Initial Voting: Directly following initial vote, there was an extended conversation regarding prioritization and what resources the SIG would bring to a bevy of issues.

Issue	Number of Votes
Community Capacity (trained providers, jobs/options/community connections/job development)	14
Caseload/Relationships	12
Forum for Broad Policy Discussions (Quality, parental role, liability)	11
Training for Families & Self-Advocates	11
Brokerage Rates/Sustainability/Hydraulic	10
Brokerage operations (FI/Paperwork)	8
Touch Points between Comp/Brokerage (involvement in individual plan development)	6
Training for Support/Providers	3
Post Roll Out Discussions	2

Mike Maley mentioned that the paired down list should have the following expectations attached:

A) Would have an outcome

B) Would be on the standing agenda and

C) Expectation that there is action for meeting those outcomes within the year.

· The group reviewed a second, paired-down list:

- Forum for Policy Discussion

- Community Capacity

- Caseloads

- Training for Families/Self Advocates

- Rates

Next Step: What are the Outcomes? Why? How Can We Keep Person Centered Focus in the Quality of Services?

Group discussed the need for prioritizing the two items that the State and the Brokerages will focus on. (Rates / Caseload) This does not mean that the SIG will not address the other issues (in fact, many small committees may likely splinter off to deal with specifics). Discussion about the importance of working to meet goals between meetings.

Recommendation:

“Forum for Policy Discussion” will become a standard agenda item.

Medicaid update:

Expenditure guidelines: Kristen Ahrens was contracted to look at expenditure guidelines. She has been in contact with Robin Cooper. The State has received the draft of the document. A power point presentation has also been crafted with trainer narrative for this presentation. Need to set up a meeting to review this—August 8^th is the date set for the State review.

Recommendation:

The expenditure guidelines document will be brought to the SIG for review and input. THIS WILL BE AN AGENDA ITEM FOR THE NEXT SIG MEETING. Try to get the draft out to members in advance.

Development of Action Plan for Prioritized Items

· Implementation Givens

- Semi Independent Living Program - SILP— about 250 people supported in these general fund programs, about 90 have employment with voc providers as well. Last group of transition groups that have to be incorporated into brokerage services. To be incorporated in October, 2006. A workgroup has already been established and has begun work.

Priorities:

§ Identify this group versus Supported Living group;

§ Walk backwards to setup timelines for what to do

- Comprehensive 300—Comprehensive services for 300 people, who are not in crisis. NEXT SIG MEETING AGENDA ITEM

§ Currently 40 individuals being served in state, 130 new individuals need to develop services for in 2005-2007 biennium with the implementation 06-07. Workgroup is established and meeting.

· Clarified who would be eligible

· Develop capacity

· Looking at expanding capacity including identifying what is missing in the system— example: development of another agency to co-share employment issue

· Rolling implementation – Likely to go regionally for development of services for certain period of time

· Areas will be targeted by September. Counties will know where they are in development schedule (meeting end of August 2005)

- Medicaid/Medicare Modernization Act

§ State/County/brokerage staff will have to be informed as to what information to inform customers and families

o State and county will need to work on logistics for trainings in October/November—train the trainer type sessions;

§ Co-pay to pay for prescriptions—amount not for sure $0.50 – 2.00; registration Oct/Nov with package implementation January 2006;

§ Affects possibly up to 60% of DD population

· State has a workgroup; JoAnne, Cynthia, Judy, Tim, Bev (will find a brokerage rep) for a SIG workgroup;

o Look at policy implications of the Medicare Modernization Act (such as variances); medical offsets (what does that include, do a guestimate?)

- New Brokerage

§ Need for new brokerage— At the end of this biennium 07 we will be at capacity.

§ How do we ID a brokerage? Certification needed? Do we change/adjust? What is the population? Process?

§ Would like to work through the procedure, so that initial information is decided by mid-biennium;

§ We are still using old formulas and data (from info 5 yrs ago); by next year, some brokerages will be at capacity; other areas we are finding many individuals who had not been identified;

§ Need to define the waitlist and use the information to determine the new brokerage. Currently, the waitlist appears uneven;

§ Where do we start? What should be our enrollment strategies.

Recommendation:

Begin the initial policy discussions at the SIG and then create a workgroup. AGENDA ITEM FOR NEXT SIG MEETING?

- Data and Accountability

§ This may be more reporting, than formation of a workgroup;

§ Xpress

§ What are necessary components for brokerage in Xpress?

§ Have to figure out how to incorporate separate flexible funding streams

§ For example: Transportation— the funding has been used in different ways -

o Some to bolster mass transit

o Some through provider—employment or residential

o A lot of Voc transfers came with transportation dollars which were outside of their brokerage benefit levels—needs to be dealt with for Xpress to work;

o UPDATE ON NEXT AGENDA ITEM

§ Discussion about the requests for data from stakeholder groups or others and the use of data.

Recommendation:

Requests for specific data should be brought to the SIG with an explanation on what is being requested from whom and how the data is going to be used.

• Quality Assurance

Outcome:

QA becomes an important part of the SIG decision making process

- Question was raised about the SIG function as a part of the Quality Assurance Plan.

- In the past it was felt that the SIG was spending a large amount of time on the QA part of the agenda, but mostly reviewing forms and “wordsmithing”.

- Volunteers will meet with Vicki to talk about structure—Bill—

- We will have one more SIG meeting to decide if it continues to make sense. Don’t want to lose the QA feedback. Necessary for the group to do its work.

- If there is still a lot of detail work to do, suggestion was made to form a workgroup for examination of QA forms and reports. End would be a product be brought back to the main SIG.

Recommendation / Action:

Bill will meet with Vicki to structure QA portion of the meeting.

• Caseload

Outcome:

Increase the time Pas have to spend with customers.

Increase the amount of time PAs have to spend on community capacity development, building relationships, person centered planning, customer / family training

- Current caseload projection interfere with the ability to do the job that is defined. Look at original assumptions and see if that is what the PA should actually be doing;

- How would we know it makes a difference? High level of customer satisfaction.. other measures?

Strategies:

- look at original assumptions; look at other ways to address paperwork; look elsewhere for ideas (other states, technology); money?? (look at PA job components);

- Pre enrollment trainings of families-would that reduce some of the pressure off of the PA ? (some of the brokerages have been doing this, but it has been a struggle due to PA time constraints with handling of other PA job components)

-

Recommendation / Action:

- Form a workgroup with work being done on alternate months as SIG meeting (work being done outside of the SIG);

- Workgroup will define what the issues / questions. Will bring information back to SIG for review and discussion.

- Membership —Larry, Pam, Caryl, Bev (will add a brokerage PA), Cynthia, Kathy, Kristie, Mike, Tom, Lynn (will find county rep) Mike Maley will convene the group.

Break for Dinner. Very Hot. Group decided not to meet after dinner.

Change in agenda to reflect the need to leave Retreat Center earlier than originally scheduled.

FRIDAY, JULY 22, 2005

Happy Birthday Lynn Greenwood!

Debrief and follow up to yesterday

• Kathy inquired about the assumption regarding stake-holder groups. For example, independent contractors may not always be able to attend events. In addition, it’s important that self-advocates contribute in a meaningful fashion.
• Bill reviewed the priorities: Forum for Policy Discussion; Community Capacity; Caseloads of PA’s; Training for Families & Self-Advocates and Rates. In addition, the Givens list needs to be completed. All these subjects will be on the agenda for the SIG; State/Brokerages will agree to invest time/resources to address Rates and Caseloads as a priority. However, it does not mean they will not be involved in the other priority areas, just that they will not carry the major work load.
• Margaret emphasized the need to follow through on this planning effort and not let the intense planning fall to the wayside, as other efforts and documents have. Example given was the last Half-ly and efforts with the State & Brokerages staff.

Recommendation:

Documents that were generated by the Brokerages / State meetings and the Half-ly will be sent to the SIG as they had not yet received them.

• Discussion occurred regarding how to prioritize the parking lot issues, such as the list of assumptions that have been discussed amongst the SIG in recent years.
• Mike requested the need to clarify the data reporting needs from the State and Brokerages. Discussion occurred to address this. Arlene indicated the family self-advocates group requests for data may need to continue, and that these, as well as those for other constituent groups will need to go before the full SIG.

Recommendation:

Need to formalize requests from the SIG with explanations about why the data is requested and what it will be used for.

• Judy reminded us of the SAAL White Papers and that every family should have one of them.

• One possibility is to “adjoin” the White Papers with the “Roadmap to Support Services”. The family self-advocate group will put this on the agenda for the next meeting. (See Roadmap discussion)

Membership Discussion / Report from Workgroup

The constituent groups are: Self advocates; Family; Advocate groups; Brokerages; Local Government; State; Provider organizations, Independent providers, and Others. At this time OTAC is in the Other Category. We would talk to someone from Education (transition) and Vocational Rehabilitation about joining.. They would have a vote. Agreed each group would have four members. Each group would get two official votes when consensus is not reached and a vote is required. Each group has the responsibility for identifying the four members to the SIG. In the cases of, perhaps only one of four attending, that constituent group would still get two votes. We will no longer have the “primary and secondary” members.

Continued Discussion on identified Key Priorities

· Training for Families and Self Advocates

Outcomes:

• Families and customers know and understand the philosophy and values of self-determination, and know where to seek the tools to make it happen;
• Families and customers have the tools to create a life, know the questions to ask;
• Families and customers understand their roles and responsibilities
• Family and customer training could help alleviate part of the PA work load of correcting the invoices and time sheets.

Discussion:

o Jo Ann noted that on-going training was part of the discussion yesterday.

o Patricia noted the paper work changes a lot and it is easy to forget how to do time sheets; this emphasizes the need to provide on-going training – tools to make it happen, tools for creating life, sex education and friends; knowing what questions to ask, know roles and responsibilities.

o It was noted was that some effort in training on FI issues hasn’t worked, and that a variety of methods need to be used.

o Need to ensure the focus on the individual is held, for example Charlene’s comments yesterday on specific needs such as sex education.

o Sometimes we need to go back to the basics and ensure people know about self-directed support systems.

o Mike noted the responsibility piece of the system needs to be added.

o Cynthia discussed the need to do something like an orientation for families and customers that would address some of the issues of mentioned and FI needs.

o It is important to recognize that funding must be attached to the training needs.

o Arlene commented that individuals and families don’t always know what is available to them. This is also a training need.

o Kathy discussed need to be sensitivity to the fact that people are overwhelmed.

o Need to expand training opportunities to audience beyond people who are currently in system, but also include individuals waiting for services or those younger folks who will eventually come in to the system.

Recommendation:

Establish a training workgroup to compile materials already existing; identify gaps; develop materials; identify and promote different approaches to getting materials and information into the hands of families and customers.

Members: Judy, Joanne, Marci I, Cindy, Arlene, Mike, Wendy (SDRI), Tom, Tara, Cynthia, Joe, Scott, & and Kathy will provide support to that group. Lynn will investigate a local government rep. Cynthia will convene the group.

• Community Capacity

Outcome:

o Types of activities the individual is engaged in, frequency of involvement and their satisfaction increases;

o Choices increase in variety;

o Increase in jobs/job developers and coaches, meaningful employment;

o Increased capacity of other systems and community entities to respond / include our population

Strategies and Discussion:

o Look at emerging models.

o What are people requesting that is not available?

o Look at both the “what” people asking for and the “how” things are being done, including “why”;

o Look at level of quality...not meeting the quality standards people are asking for?

o Not just focus on what you can / can’t buy;

o What do people want or need that they are not getting? What are they getting that they like?

o Must be able to measure what we want so we know if we are getting there

o Increase access to providers; re-tooling traditional providers.

o Review the assumption that PA’s had a primary responsibility to do the grass roots capacity development.

o Need for creativity. Connections with other family members.

o Capacity needs to have a descriptor to make it clearer. Example- Recreation, housing, social networks and employment,

o People bump up into the problems in the legal system, capacity is also addressing barriers people have to full integration in the community

o Many examples focused on access to tools and supports to achieve employment:

§ Employment as a priority. Also, the basic need for families to be able to find a provider.

§ Noted was the fact that a group is already starting a discussion about employment.

§ Kathy noted that employment isn’t for everyone. Also noted the need for a marketing program to entice businesses to work with people with developmental disabilities

§ Important to educate individuals on the value of employment.

§ Need to relax some of the criteria and costs of being a certified VR provider

o Focus on communities as communities and the relationship building for natural supports.

o Need to be looking globally at community and individual’s needs /wants (John McKnight)

o Mary Lee: SIG role isn’t to drill this down but to look at what policies are needed and provide directions in a broader way.

o Effort should be focused at local community levels, look at already existing structure.

o Broader group also needed to be a conduit to share the success stories throughout the State.

o Pay attention to lessons learned. So much information already in communities.

o Explore use of recruit volunteers to do some of these things.

o Could use the Navigators or site on the OCDD website for people to discuss the capacity.

o Need to get the full diversity in the State; rural – urban, demographics, etc

o When people ask what they want is it the full knowledge of what could be?

Recommendations / Action

o Bring information from the facilitated Stakeholders meetings (SPD and ORA) to next SIG

o Link to informal group beginning discussion on employment

o We will begin a process to gather information and identify good models of community capacity development.

o BROKERAGE directors will frame some questions and time lines for gathering information and present them to the SIG by next SIG meeting.

The questions will attempt to determine what people need / want and also what they also currently have and what they like; need to address the natural supports aspect, social networks.

o Revisit this in 6 months.

• Rates

Outcome:

o Purchase of affordable, quality services for customers; supports that are diverse and meet individual needs over time.

Discussion and Strategies:

o Mike noted this is an area where there is no data available, e.g., how many exceptions are made, how much is paid for what service code, what various providers are charging. EXPRS will bring some data into the picture.

o Lynn noted this is a system wide issue. Mary Lee pointed out there will be a ripple effect from current comp system rate restructuring.

o There are different rates for the same things in different systems. Parity issues

o Bev noted the costs of doing business for a providers include the service agreements, behind the scenes meetings, invoicing, coordination of services, progress notes, etc and not just the face to face contact that they are able to bill for.

o Need to look at administrative efficiencies, including potential policy and philosophical changes.

o Mike inquired, what are the problems of today and what are the problems of tomorrow?

o Kathy noted her choice to go to OVRS for job development when the brokerages dropped the rates for job development.

o Need to validate the assumptions of rates don’t cover costs. How do we do that?

o Need to look at hydraulics of loss of service hours when rates go up.

o The expenditure guidelines will come out at the next SIG meeting as revised by Kristen Ahrens.

o Tim offered to do a survey on the web with provider organizations regarding rate related questions.

o Pam noted the independent providers can’t make a living because they are at the lower end of the pay scale and also do not get benefits.

o Mike recommends doing a critical evaluation of the rate guidelines. Focus in on where the problems are. What is the issue? How much of an issue is it? (See Data / Accountability. Guidelines will be brought to SIG for review)

o Must think in terms of the complexities and the impact to service delivery.

o Consider pooling domestic employees for health insurance and workers comp. Liability of families are a concern. What are other states doing?

o Consider comparing the rates in Support Services and other parts of the system, eg OVRS, social rec programs.

o Long Term Issues – Xpress and rate restructuring will impact Support Services Rates

Recommendations / Actions

• Explore the idea of doing a series of surveys to gather data and begin to develop a baseline.
• Determine the impact of current rates on ability of individual to get services and provider to provide services. Potential questions about brokerage information. How many people are buying what services from what providers? Problems with access? Specific rates for specific costs? What exceptions are currently made?
• If survey done, need to run a draft through some members of the SIG:
• Survey Design Group: Mike, Mary Lee, Marci A., Cindy, Margaret, Patricia, Cynthia, and Kathy. Tim will convene Design group. Could also consider families also sending a survey; Oregon Network list could be used.

• Policy Discussions

Outcome: SIG reviews, discusses, and makes recommendations on key policy issues.

Strategies / Discussions:

o There are a number of issues that the group identified as Policy Issues like the role of families, families and customers, and quality assurance. Mary Lee noted the last SIG meeting identified many of these.

Recommendation / Action

o Recommend that we start by creating a group that will look at the role of families.

o Will review previous discussions on this topic, review parking lot, and define a process to have the conversation.

o Kathryn will pull the group together. Members of group Bev, Cynthia, Judy, Kathryn, Pat Cheney (sp), Arlene, Tom (remotely).

Lynn again noted, she will review groups for representation from local governments.

Review of the initial desired outcomes:

• Assumptions of Support Services:

o We shifted from the planning to the implementation phase.

o Smaller work groups will look at specific issues.

o Four to Five priority issues have been established, with the implementation “givens”.

o Bill added orientation of new members as a priority. Generally went well for people.

Thanks

• Thanks to the planning committee! (which needs to have a self advocate on)
• Thanks to the clean up crew!
• Thanks to Kathryn for recording! And all the note takers, Arlene, Larry, and Margaret!

Evaluation of the site, meals, etc.

• Nostalgic feeling, communal bathrooms and dining hall.
• No cell phones! Being far enough away to feel away
• Staff was very great.
• Pam liked the food! Joe ate more than two pieces of pizza!
• Everything is self contained. Accessibility pretty good.
• First time in a sleeping bag for Charlene at age 61!

• Smaller groups for in depth discussion would have been helpful, talking to people about issues we care about the most.
• Need to have a social committee as well to do relationship building.

Evaluation of agenda:

• Impressed with how much we stayed on task. We really got a lot accomplished. The work group forum will be able to accomplish a lot.
• Liked that we were all able to vote on the priorities. Same issues for many different people.
• Hold judgment on whether or not to have another retreat, until we see if we follow through.
• Accomplished the big purpose of re-grouping with the SIG.
• Preference for a retreat every 6 months. Preference for every 1 – 2 years.
• Full implementation may be another time that triggers the retreat.
• Good to have social time to get to know people.
• Agreed we should revisit this in the spring as to whether or not to have another retreat and when.

SIG meetings

• Next meeting was scheduled for September 29^th at RCO in Salem.

Recommendations:

• Plan is to stay on an every other month meeting schedule. Council will bring lap top.

o The popcorn group will establish agendas and make sure information gets out: , Kathryn, Mike, Mary Lee, Bill, Joe, Dan, Cindy.

Meeting Ended with the CAMP Song, sung to Home on the Range

Oh give me a SIG

Where the problems are big.

Where the State and the advocates play.

Where sometimes is heard a discouraging word

But supports are improving each day

CHORUS

SIG, SIG we expound

Where we wrestle with issues profound

Where ideas overflow,

Though some get no dough

But we usually find common ground.

Where providers are good,

The service so true

And the choices are many and gay

That I would not exchange

My SIG though its strange

For the wait lists that we blew away!

THE END!!

Workgroups Established:

• Publication

Workgroup will be created to develop a distribution plan including getting information out to schools to let know of availability. Cynthia will reconvene the workgroup along with a self-advocate, please let Cynthia know if you would like to be on the group.

• MMA - SIG

Membership: JoAnne, Cynthia, Judy, Tim, Bev (will find a brokerage rep)

• Caseload

Form a workgroup with work being done on alternate months as SIG meeting (work being done outside of the SIG);

Workgroup will define what the issues / questions. Will bring information back to SIG for review and discussion.

Membership —Larry, Pam, Caryl, Bev (will add a brokerage PA), Cynthia, Kathy, Kristie, Mike, Tom, Lynn (will find county rep) Mike Maley will convene the group.

• Family and Self Advocate Training

Establish a training workgroup to compile materials already existing; identify gaps; develop materials; identify and promote different approaches to getting materials and information into the hands of families and customers.

Membership: Judy, Joanne, Marci I, Cindy, Arlene, Mike, Wendy (SDRI), Tom, Tara, Cynthia, Joe, Scott, & and Kathy will provide support to that group. Lynn will investigate a local government rep. Cynthia will convene the group.

• Rates Survey Design Group:

Membership: Mike, Mary Lee, Marci A., Cindy, Margaret, Patricia, Cynthia, Tim and Kathy.

Tim will convene Design group. Could also consider families also sending a survey; Oregon Network list could be used.

• Policy Discussion – Role of Families

Kathryn will pull the group together. Members of group Bev, Cynthia, Judy, Kathryn, Pat Cheney (sp), Arlene, Tom (remotely).Lynn again noted, she will review groups for representation from local governments.

· Popcorn

The popcorn group will establish agendas and make sure information gets out.

Membership: Kathryn, Mike, Mary Lee, Bill, Joe, Dan, Cindy.