Why Vision Matters

We have talked a lot about the series of policy changes back in late 2013 that resulted in the statewide Community First Choice K Plan, in consolidating services and payment into the eXPRS Plan of Care, and the rise of the Adult Needs Assessment as a primary point of departure for service planning and funding. Today, we believe that more change is necessary if Oregon is to regain a functional, sustainable structure for IDD services.

In our last post, we talked about the series of changes that reshaped the landscape for intellectual and developmental disability (IDD) services in Oregon. From the summer of 2013 until the close of 2015, we were taking on new processes, new forms, new rules, and new roles as fast as we could implement them. (And quite often, faster than we could implement them.) Now, as we take a breath, it feels wrong to be talking about system change again. But we are talking about it, and we have to keep talking about it, because where we have arrived isn’t where we get to stay. Our services are too costly, and they aren’t netting the kind of outcomes that we’d like to see for people in services. And therein lies the problem–how will we know success when we see it? To get to the right end, you have to go about things the right way.


source: freeimages.com

Start with a vision.  Unfortunately, just because you put a lot of energy and effort into a project doesn’t guarantee its success. We started the 2013 change process with the goal of funding our services through the Community First Choice Option (K Plan), instead of through the collection of Medicaid Waivers through which services were previously authorized. At the outset, state leadership held the belief that this change in funding authority would be a back-end change, imperceptible to people using the services. It didn’t turn out that way. Making a federal funding authority our North Star didn’t lead us very far. This perceived lack of direction was part of what compelled OSSA to come up with our Vision for the Future of Disability Services in Oregon. It’s not enough to know how we’re going to pay for the services, we need to start with why we want to have the services in the first place. What is our vision for Oregonians with IDD? How should people be treated? What place should they hold in our communities? We need to start with a destination in mind, and then figure out how to get there.

Think long-term. It’s hard for public policy to plan for the long-term. Lawmakers come and go, appointed officials change office, public opinion supports a project one day, and has forgotten it the next. This capricious nature is why stakeholders must come together and do the long-term planning and visioning with state leadership, in an effort to safeguard funding and services for future Oregonians with IDD and their families. Many of the changes enacted with the K Plan in 2013 were reactionary. We were reacting to budget holes and to federal compliance issues. Though budgetary concerns and federal compliance are both important considerations, budgets are in a state of flux, as is federal law. Responding to their whims without balancing the long-term needs of a system will not get us the results we want.

planning for the future

source: freeimages.com

Plan for a Whole Life, not a Service Life. When evaluating a social service, it’s easy to focus on what you can get–how many hours, how much money, what’s the upper limit? But focusing on the benefit itself won’t get a person the outcomes they desire. You have to start with an idea of the life you want–who do you want to be, what do you want to do, what’s the upper limit of your happiness? We call this approach seeking a Whole Life instead of a Service Life, and it is key to making the most out of the services available. As a community, we have to refocus on the people using these services, and the lives they want to live, connected to their communities, building relationships, and benefiting from paid and unpaid supports. When we start with a goal, we often find that we can balance the imperative to be good stewards of public funds with the necessary funding and supports to live a full life.

This isn’t a detailed plan, but it is a place to start. There will be debates and arguments, differences in opinion about where to spend and where to save. We don’t have to agree on everything. But, in the end, what matters is we are all pulling in the same direction–toward rich and fulfilling lives for all Oregonians.


Nothing Endures But Change

We have talked a lot about the series of policy changes back in late 2013 that resulted in the statewide Community First Choice K Plan, in consolidating services and payment into the eXPRS Plan of Care, and the rise of the Adult Needs Assessment as a primary point of departure for service planning and funding. The entire system still struggles to find equilibrium in the wake of such wholesale change. Equity in service allocations, rates of pay, and time spent on face-to-face services vs. paperwork has been disrupted due to choices made during the implementation of these policies. Today, we believe that more change is necessary if Oregon is to regain a functional, sustainable structure for IDD services.

Disintegrating-DollarSpending  When Support Services were founded back in the early 2000s, the eligibility requirements for IDD services were intentionally broad to serve as many people as possible. The hard caps on service allocations, averaging around $14,000 annually by 2012, kept service spending well in hand despite increasing enrollment. Hard caps such as this were eliminated under the K Plan, and we have seen a corresponding rise in cost-per-case within Support Services. Another reason for this rise is Oregon’s choice of assessment tool, which currently determines service allocations. The Adult Needs Assessment (ANA) is an Oregon invention, adapted from the SNAP assessment used for years to determine Adult Foster Care rates. The ANA had to be adapted quickly, and there was not time for the Office of Developmental Disability Services to ensure that the tool was a valid measure of needs, nor that it was reliable from one person to another. The resource allocation mechanism was likewise completed without adequate time to test and ensure that funding was allocated at an appropriate level. The result of the rush to implement the ANA is a tool that allocates substantially more funds than are being used, on average. It is also more medical and deficits-focused than most stakeholders would like. The ANA and uncapped service structure have combined for a precipitous increase in spending by Support Services customers–a 42% increase from April 2014 to April 2015, according to the Department’s report to the Joint Interim Subcommittee on Human Services on September 28, 2015. These spending trends are not sustainable, and a core feature of any high-quality service system for people with IDD is that they are dependable and assured from year to year.

Case management  K Plan policy created a sea-change for Personal Agents, who were essentially forced to relearn their jobs while continuing to perform them. Anyone who has had a Personal Agent since before 2013 has probably felt the crunch–less face time, slower response time, more paperwork. New reporting requirements, mandated forms, and the eXPRS database have all added layers of additional responsibility to the Personal Agent position, moving them further and further away from the people they would like to serve. Strong case management is critical to a healthy, functioning IDD system–case managers serve as the pivot point for all services, a single focus of coordination to ensure that we adhere to state and federal rules, and keep the individual’s direction and wishes primary. A change in the job description for case managers, and in the structure of case management, is necessary to refocus worker time and workforce strength.

Pay rates  Service hours have become abundant for many people in the IDD service system. However, the rate of pay attached to those hours has decreased, or failed to keep pace with rising inflation. The result of this is that individuals are simply not able to find providers for all of the service hours for which they are currently eligible. Agency providers of IDD services have hundreds of open positions across the state that remain unfilled. As the economy improves and the reimbursement rate for these services remains low, skilled, experienced providers leave the system for jobs in unrelated fields. For a more detailed discussion of this phenomenon, please check out The Cost of Compassion, a short film created by the Oregon Rehabilitation Association.

Change is coming, and we need to be prepared. In our next post, we will discuss the methods and approach we will need to employ during the coming period of policy change. We have to learn from our recent history, improve on our own performance, and learn from our mistakes if we hope not to repeat them.

Vision, January 2016: A Second Look at the Future of IDD Services in Oregon

Nearly one year ago, the Oregon Support Services Association shared our February 2015 Vision for the Future of Disability Services in Oregon. It was meant to be a comprehensive look at what we want for our service system, with ideas about how we might get there. While the ultimate vision hasn’t changed substantially, the ideas for how we get there have been refined to fit a January 2016 understanding of the world. Click here to view the OSSA Vision For the Future of Disability Services in Oregon, January 2016.

As OSSA President Larry Deal and I reviewed our vision one year in, we were both struck by how much the IDD field has learned over the past 12 months. We have necessarily been on a crash-course education in Medicaid policy, Oregon law, and the

January 2016 deserves a second look.

It’s January 2016! IDD services in Oregon deserve a second look.

realities of working in the field. Oregon’s IDD system has been asking itself what is possible, what it values, and at what cost. A centerpiece of our original Vision was the suggestion that

Oregon seek two distinct K Plan options–one for Self-Directed services, and one for Agency-Directed services. Oregon’s current K State Plan is approved under Agency-Directed authority, which does not allow for the level of individual direction and control that we would seek to return. Subsequent work locally and with federal CMS has taught us that there can be only one K State Plan. However, that single plan can be written for a more complex authority that blends Agency-Directed structures with Self-Directed options. We hope that Oregon will move forward with this in the coming months as the K Plan renewal enters planning stage.

Each section has been updated with a paragraph at the bottom detailing major developments relevant to the topic. The highlights will give you a good idea of what our 2015 work has accomplished. However, we have also made comprehensive updates to every page throughout the document–if you can, please read it through.

Highlights of this January 2016 update:

  • Pg. 7 Case Management Funding is new. Funding mechanism (currently, billable encounters) has increasingly dictated structure in this area (case management time is only spent on billable activities), and we need to find ways to decouple the two.
  • Pg. 8 Eligibility is under scrutiny in Oregon, which has a long history of casting the doors open wide for those who need support services; we support a broad front door.
  • Pg. 9 Choice Advising is given its own page, due to the rise in problems stemming from our current lack of direction in this area.
  • Pgs. 11-15 describe our vision of the IDD service structure; Brokerages provide case management to adults living in their own or family homes, CDDPs provider case management to adults and children living in licensed/certified home settings, and both Brokerages and CDDPs are able to serve children in their own or family homes. There is a lot to say about how to get to this! Take a look at the details of this section.
  • Pg. 16 Plan Development has changed a lot in one year, with the introduction and full roll out of the Oregon ISP document for every individual in service.
  • Pg. 17 Assessment is an area in which a lot of work has been done, and even more is left to do.
  • Pg. 19 Community Provider Capacity hasn’t changed a lot in the vision, but there are a lot of large structural forces at work (federal laws, collective bargaining, etc.) driving this part of the system. 2016 is a make-or-break year for this area of the system.
  • Pg. 22 Data Systems have not seen the improvement that we would have hoped. We will continue to advocate for a functional, supportive statewide data system.

Our Vision for the Future is meant to be a living document, changing as conditions change and our understanding expands. We have committed to updating this every six months, especially during the rapid pace of change that seems poised to continue in Oregon’s IDD service system. Contribute your unique perspective in the comments below. Tell us what we got wrong, and what we got right. It is up to all of us to decide what comes next for Oregon.

Choosing Between Vital Parts is a Losing Proposition for I/DD

When it comes to full lives for Oregonians with intellectual and developmental disabilities, we want it all.  As a member of the Oregon I/DD Coalition, OSSA helped to identify four top priorities for the 2015 legislative budgeting session.  These four priorities, together, represent a pathway to richer lives for Oregonians with I/DD.  The four priorities are:

  • DSP Wages: Raise the wage for Direct Support Professionals.
  • Brokerage and CDDP Workload Model Budget:  Fund workload model at proposed 95% equity for CDDPs and Brokerages.
  • Fairview Trust:  Keep the promise of community housing opportunities for people with IDD and restore the Fairview Trust.
  • Employment: Continue funding to improve employment outcomes for people with IDD.

These priorities are listed in no particular order, for one very important reason: we cannot possibly weight one over the other if we are truly in support of people with intellectual and developmental disabilities.  Together, these elements of community employment, quality support professionals, community housing, and high-quality case management work together in a person’s life.  Each makes the other possible.

When I think about trying to prioritize our four adopted budget goals, it seems to me that I’d be choosing between the “neck” of the system (our case management force, connecting people to vital resources) or the “head” of the system (the resources people need to create full lives).  The head will not prosper without a neck; employment services, housing services, and provider organizations will not prosper without a strong case management force to navigate people to engage with them.  Likewise, the neck is pointless without a head; case management services are pointless without the employment, housing, and provider resources to which we can direct customers.  Choosing between vital parts is a losing proposition for the I/DD body.

(public domain source)

(public domain source)

Choosing between equally critical services, or offering one to be cut over another, is a non-starter for the OSSA.  However, this does not mean that OSSA is unwilling to engage in the process of tough decision-making, should it be required at DHS.  The Office of Developmental Disabilities has new, dedicated, and promising leadership in Director Lilia Teninty.  We do not ask her to make hard decisions in a vacuum, but instead are willing to provide important education on the impacts and ramifications of various options as they are considered.  We do not wish to instruct, but we are happy to support, the budgeting activities of ODDS.

OSSA sees an incredible opportunity at hand for the many components of the Oregon I/DD community to develop a strong, cohesive presence at the capitol.  Our strength is in the purity of our collective goal: to promote quality service and supports which respectfully further the rights, equality, justice, and inclusion for all Oregonians with intellectual and developmental disabilities and their families.

OSSA’s Vision for the Future of Disability Services in Oregon

Sometimes, in the midst of change, it is hard to see the way forward.  Oregon’s system of services to people with intellectual and developmental disabilities once felt like it had a clear identity as a national leader for progressive, community-based service.  We closed down institutions.  We gave control to the people using the services.  We showed that giving people self-determination can not only be right, it can also be cost-effective, good business.  Somewhere, in the crush of change and hurtling, forward momentum, we have lost the clarity of that identity.

Oregon the beautiful, through and through.

Oregon the beautiful, through and through.

Now is the time to work to reclaim that pioneering spirit at the heart of our state.  Make no mistake, it will take work–no one else in the nation is using the K Plan in the same way that Oregon has.  We’re out on the grand stage, we’re under the watchful eye of the national Centers for Medicare and Medicaid Services, and we need to make this work.

It is in the spirit of collaboration, excellence, and service that we offer our Vision for the Future.  As is stated in our Opening Thoughts on page 2, this is “intended to be a starting point for discussion,” not a perfect, finished product.  We start with the vision and we fill in the rest, together.ossacoverforfacebook

Take a look, let your gears turn, and share your thoughts with us.

Thank you!

OSSA Response to Personal Support Worker Agreement 06.25.2012

Under the headline Historic Tentative Agreement Reached for Care Providers, Service Employees International Union (SEIU) Local 503 has described the negotiated agreement for Personal Support Workers who are employed by customers of brokerages.

View SEIU’s document here

Although the actual Collective Bargaining Agreement has not been published yet, some of the thirteen points made by SEIU in its document will need to be closely monitored to ensure the philosophy and practices that Oregonians with intellectual and developmental disabilities and their families fought so hard for in the Staley Agreement are maintained with the highest integrity. Most notably, the disability community must be vigilant in its advocacy for people with disabilities to continue to design and direct their own supports.

As brokerages have proven for the past eleven years, our customer and family advocacy efforts will continue and we hope to have as much success in the future as we have demonstrated in the past. Despite multiple budget cuts and constant expansion of administrative requirements, our services have remained strong and intact and Oregon’s person-centered model is known nationwide.

Please continue reading for a point-by-point response to the document’s points.


  • SEIU: Clear, consistent standards: (The Agreement) requires brokerages to clearly communicate all policies and procedures on items like payable services and creates a committee to give Personal Support workers a voice in the creation of a centralized payroll system to ensure timely payments.
  • OSSA: We agree that clear, consistent standards (especially in the ever-changing face of our service delivery systems) are helpful and necessary practices. Our hope is that this will occur within a context of local control of customer services.


  • SEIU:  Issues Committee: (The Agreement) provides us with an ongoing forum to meet with the State to problem solve program inconsistencies, consider initiatives to improve our work lives, and discuss problems that may impact sizeable groups of workers.
  • OSSA: An “Issues Committee” for problem solving and consideration of initiatives can be an effective forum as it has been for other efforts within the Oregon Home Care Commission. Support services brokerages will continue to advocate for self-advocates to be at the center of any and all discussions that might affect the quality, cost, or duration of their supports.


  • SEIU: Person-Centered Planning: (The Agreement) recognizes that our service plans should reflect person-centered planning
  • OSSA: Person-Centered Planning does recognize that the brokerage customer’s plan is person-centered and indeed, Oregon has long been recognized as a leader in efforts to ensure that people with disabilities direct their own supports.


  • SEIU: Training:  (The Agreement) provides strong worker representation on a committee to develop relevant training classes and identify professional development opportunities.
  • OSSA: Since inclusion in the Home Care Commission, training has been a welcome addition to opportunities for the employees of support services customers. Brokerages have done considerable outreach to share information regarding HCC trainings and will continue to do so.


  • SEIU: Improved Communication: (The Agreement) guarantees we get a job duty description before beginning work. If state funding for hours and/or services changes, our union will be notified within 7 days after consumers are informed.
  • OSSA: Strong and effective communication is essential to ensure people are getting the supports they need to achieve their goals. CMS’ requirement that all services be authorized by service recipients prior to service delivery provides a strong incentive for customers and their employees to communicate openly and regularly.


  • SEIU: Wage Increase: (The Agreement allows) increases in wages of 1.25% for workers outside of the Independent Choices and the PC-20 Programs effective 4/1/12. Workers in the PC-20 Program will be increased to $10.20/hour effective the first full month after ratification. Wage increases should not impact a consumer’s ability to purchase services.
  • OSSA: Support service brokerages support the payment of living wages to all workers in development disability services and we agree that wage increases should not impact a customer’s ability to purchase services. How wage increases will happen without impacting customers’ ability to purchases services has not been defined nor addressed yet by ODDS or by SEIU.


  • SEIU: Grievance Procedure: (The Agreement) creates a binding process to resolve contract violations.
  • OSSA: Support services brokerages believe that a formal grievance procedure is an appropriate method of resolving contract violations.


  • SEIU: Union Rights: (The Agreement) ensures that the state will provide us with the information we need to stay organized and in contact with each other as providers, dues and fair share payroll deductions and easier access to important information from our union at free trainings. Our union can share information about our rights and how to protect services for our consumers before and after Oregon Home Care Commission trainings. If orientations are scheduled, then we can also have twenty minutes of guaranteed time to learn more about our contract and our union rights.
  • OSSA: Union rights require the state to provide information from all of the entities affected by House Bill 3618 and there has been significant effort to problem solve the complexities of information sharing from the local level.


  • SEIU: No Discrimination:  (The Agreement) protects us against discrimination based race, sex, sexual orientation, and other protected statuses.
  • OSSA: Support services brokerages support and have always supported including anti-discrimination policies. They are a hallmark of our rights as citizens.


  • SEIU: Worker’s Compensation: (The Agreement) protects us if we are injured on the job.
  • OSSA: Worker’s compensation has been a concern for support services brokerages for more than 10 years and it was a welcome result of the inclusion of support services providers in the Home Care Commission after the passage of House Bill 3618.


  • SEIU: Registry & Referral System:  (The Agreement) gives us a voice in creating a referral system so we can find work and respite caregivers easier.
  • OSSA: We believe a registry and referral system has the potential to add enormous value to the many customers and families who are challenged to find appropriate providers to meet support needs.


  • SEIU: Mileage Reimbursement:  (The Agreement) protects and improves our access to mileage reimbursement. Consumers may authorize medical mileage to be paid directly to personal support workers and authorized mileage will be reimbursed even if our consumer is no longer eligible for services.
  • OSSA: Mileage reimbursement is commonplace in support services and has been since the inception of brokerages. However, current support services Oregon Administrative Rules prohibit reimbursement for medical mileage. Brokerages will look to ODDS to resolve this and any other conflicts that might arise between the collective bargaining agreement and current OARs.


  • SEIU: Wage Overpayments: (The Agreement) creates first-time overpayment rights. If paid by a voucher, workers can repay an overpayment in 5% intervals. If paid by an invoice system and an overpayment is discovered after 10 days, personal support workers have a voice in deciding a reasonable overpayment system.
  • OSSA: Support service brokerages take their responsibility as custodians of public funds very seriously. In the rare circumstance that a wage overpayment occurs we make every effort to address the overpayment quickly and fairly. Naturally, we must ensure that the number one priority is continued availability of funds so that no lapse in essential customer supports occurs.

We look forward to the continued success of self-directed supports with each new change and will continue to advocate for adults with developmental disabilities in our services.

Margaret Theisen (Full Access) – OSSA President
Dan Peccia (Self Determination Resources Inc.) – OSSA Vice President
Bill Uhlman (Eastern Oregon Support Services Brokerage) – OSSA Secretary/ Treasurer
Barbara Hedrick (Creative Supports Inc.)

Ed Little, Jr. (Mentor Oregon Brokerage – South)
Barbara Charette (Southern Oregon Regional Brokerage)
Bev Herrin (Resource Connections of Oregon)
Jill Ferns (Integrated Services Network)
Howard Miller (Inclusion Inc.)
Larry Deal (Independence Northwest)
Katie Rose (Mentor Oregon Brokerage – Metro)
Jennifer Bickett (Community Pathways Inc.)
Sarah Knight (UCP Connections)

OSSA Position Statement for Brokerage Services 2011/2013 Budget

In current budget proposals, Support Services Brokerages for Adults includes an additional set of cuts to what has already occurred multiple times since October, 2010.  This program has had specific cuts distinct from all Developmental Disability services.  Given the array of cuts to all programs we do not support any additional cuts to Developmental Disability Services.

Specific to Support Services Brokerages the following cuts have already occurred:

• Quality Assurance funding eliminated.  Overall impact, nearly 6% reduction to operations, October 1, 2010.
• 2% reduction Targeted Case Management as of August 1, 2011
• 6% reduction to administration: as of August 1, 2011.  The overall impact of these two reductions is 4% of operational funds.
• Elimination of services for Brokerage customers who are not Medicaid eligible as of October 1, 2011.  This was a 10% reduction in brokerage operational funding and 10% cut in customers in services.
*This net reduction to date in the past 18 months is 20%.   With the additional proposed cuts, our overall reduction is nearly 27%.  

Current proposals include an 8% Personal Agent (Targeted Case Management) cut and a 4% brokerage administrative funding cut.

Cuts to Personal Agent funding (Targeted Case Management is the federal language) are cuts to services.  Each time this funding cut occurs, a direct impact to customer services occurs.  Customer services include reducing the work of Personal Agents who:

  • Provide consultation, maintain regular contact with individuals and families and monitor progress of the service plan, organizes and conducts meetings as needed.
  • Provide extensive support and education of customers and families regarding employer rights and responsibilities, including monitoring and administration of employer fiscal accountabilities.
  • Interview customers who qualify due to disability for this type of support.
    Arrange for a variety of goods and services including but not limited to employment, community access, respite care, special medical, diet or recreational services, etc.
  • Make referrals to outside agencies, describes agency and financial options to customers and/or families, and determines financial eligibility, guides customer and family through procedures.  Develop financial plan if needed.
  • Facilitate the development by community organizations of services needed by customers that don’t currently exist or don’t currently accommodate the specific needs identified.
  • Maintain records of evaluations, service plans, referrals, service provision, case notes, extensive other documentation and follow-up reports for each individual.
  • Provide clarification and implementation of Oregon Administrative Rules and ethical practices.

In addition, Personal Agents are unique in DHS services in that they are required to monitor and approve the Medicaid funded expenses on a case by case, person by person basis.  No other part of DHS has case managers operating in this individualized, financial accountability system.

Unique to DHS disability programs is the complete elimination of services to 10% of our customers October 1, 2011.  As has occurred throughout DHS programs, brokerages have sustained a series of cuts which have already gotten to a 20% reduction with 7% additional cuts on the table.  In addition to eliminating services to 10% of previously qualified individuals, brokerage agencies have taken significant measures to address cuts:  reduction and freezing of wages and benefits; reduced positions, reduce mileage reimbursement, added furlough days; reorganizing and eliminating positions; cuts to elimination of training; cuts to all levels of services and supplies; closure of satellite offices; and other areas that impact indirect and direct support to customers.

OSSA Position on Budget Cuts

The Oregon Support Services Association (OSSA) opposes all cuts to DD services and supports all bills that preserve DD services.

Position Statement:

If additional funds are available to “buy back” services eliminated in the Governors’ proposed budget, the OSSA advocates that additional funds be spread among all DD services.  If funds are returned to the Support Services system, we advocate the following priorities within that system as follows:

  1. Restore the 10% reduction to Personal Agent Services
  2. Restore services to non waivered individuals
  3. Restore services to 18-21 year olds
  4. Restore Administrative reductions
  5. Restore Quality Assurance reductions