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.


Back to the Future

Let’s get one thing straight up front: this isn’t new.  Not at all.  In fact, this has been around for years.  In Oregon, we started to dream this dream fifteen years ago and more.  Support Services Brokerages started here.  support-services-event-127Take a moment to read this treatise/article/manifesto/guide by Ellen Cummings, a national consultant on Self-determination.  What jumps out at you?  Do you see Oregon’s past reflected in these descriptions?  Do you see Oregon’s future?  Ellen begins by speaking to archaic systems that have yet to see change in the field of intellectual and developmental disabilities services:

“There are many in current unchanged systems, however, who very much want to get away from desks and paper in order to spend a maximum amount of their time doing something different have the time and support necessary to help people with disabilities build lives, but are unable to get out from under the administrative/monitoring functions within the traditional system. Creativity and spirit become stifled in many situations and once again people who have disabilities remain in their perpetual state of waiting–waiting for change, waiting for friends, waiting for a place of their own, waiting for life. The years lost will never be regained.”


We have talked a lot about systems change here over the past two years.  A new biennium is upon us, and now is a time for reflection, self-assessment, and redirection.  Oregon has made a lot of moves to be more compliant with Medicaid rules and regulations, expand services, and bring in more federal funding for those services.  A lot of good things have come from these changes.  Children with IDD have greatly expanded access to services.  Programs are safeguarded for years to come by closer adherence to federal rules.  So: how are we doing?  Where are we at as a system, as agencies, as Personal Agents, as people receiving services?

The structure in which Personal Agents work and individuals with disabilities are supported must respond to the following imperatives:
  • that people with disabilities are living the lives they want to lead, are happy and healthy, and have solid relationships
  • that people with disabilities have opportunities for generating income
  • that people with disabilities are participating citizens of their communities
  • that approval of individual budgets be in the hands of individuals and their Personal Agents, as long as the bottom line is not exceeded
  • that Personal Agents and their Coaches (mentor/supervisors) are getting the kind of information, support, and training they need
  • that communication is clear and consistent
  • that there is a buffer between this unit and the difficult, complex systems issues which will still be covered by traditional case management
  • that the Personal Agents operate within a line item budget which is controlled by them for the performance of their work
  • that authority over expenditure of dollars allotted to this unit lies in the hands of those who work in the unit
  • that the dollars allotted be used more wisely and that they help build a positive future for the individual–an investment in one’s future
  • that evaluation of performance includes input of those receiving support

As the dust begins to clear, what will we miss as we look around us?  What parts of ourselves, of our shared history, have been neglected in this sweeping change?  The point of asking this question isn’t to lament the good old days.  Looking at our past with rose-colored glasses gets Oregon nowhere.  Instead, we look to our beginnings to instruct us on how best to rebuild a system stronger, and more compassionate, than we could have imagined before.

Because this isn’t new, and we should not pretend that we haven’t been here before.

The Time for Advocacy is Now!

Distressing news out of the capitol: lawmakers may be looking to cut $140 million from human services in order to fund a budget “hole.”  The question is, what does a $140 million cut to human services look like?  Though plan hours are not likely to be cut, vulnerable areas include provider pay rates and Brokerage funding for Personal Agents.  Brokerage Personal Agents and direct support providers have worked to implement dozens of system changes over the past two years.  With these changes has come a lot of additional workload and responsibilities, which is already cutting into the bottom line: time spent with Brokerage customers.  Any reduction in funding is going to cut further into that time.

The sun is shining on lawmakers at Oregon's Capitol Building.

The sun is shining on lawmakers at Oregon’s Capitol Building.

Now is the perfect time to flex your advocacy muscles.  Advocacy is defined as “the act of pleading or arguing in favor of something, such as a cause, idea, or policy,” and if you’re a human, chances are you’ve been engaging in advocacy your entire life.  Some people are certainly more comfortable speaking their minds than others.  The trick to being a good advocate isn’t about becoming a perfect speaker, it’s about finding the right message for you.  When you find a cause or idea that is true to your heart and soul, you will find that the words flow much more easily.

How have your Brokerage services helped you to live the life that you choose?  Please call, email, or visit your state representatives and senators, and let them know how important your Brokerage services are to you!  For more information, check out the Oregon I/DD Coalition’s special bulletin on the current need for advocacy.  You can find your legislators, and see the list of legislators on the Ways and Means Subcommittee on Human Services, the joint committee in charge of making legislative budget recommendations.  You can also get talking points and more information about each of the Coalition’s four priorities: Employment, restoring the Fairview Housing Trust, raising DSP wages, and funding Brokerage and county case management at 95%.  Each of the four priorities were selected because they fund the cornerstones of a full and meaningful life in Oregon’s communities.
Even small cuts to the 95% Case Management funding mean losses for Brokerages from last biennium, at a time when workload has greatly increased.  Let your legislators know that overworked/underfunded PAs mean that you can’t get the services you want, when you want them.  Urge them to fund the Workload Model for Brokerages and counties at 95%!

Brokerage Association Announces Leadership Changes in 2015

In the spirit of the new year, the Oregon Support Services Association announces two changes in leadership. 

Larry Deal, Executive Director of Independence Northwest brokerage, has assumed the role of OSSA President. He follows in the footsteps of Margaret Theisen, whose tenure spanned the birth of the brokerage association and four incredible years of unprecedented growth and change.   We are deeply indebted and grateful to Margaret for her influential and principled leadership. Margaret passed the torch to Larry after the association’s Board of Directors meeting in December.  Larry brings with him 13 years experience in Oregon’s Support Services system, and a deep talent for innovation, communication, and partnership. Dan Peccia of Self Determination Resources Inc. and Bill Uhlman of Eastern Oregon Support Services Brokerage will continue in their roles as Vice President and Secretary/Treasurer respectively.

Additionally, the association will begin a transition from its first Executive Director. For the past year, OSSA has been led by the incomparable Kathryn Weit. Her advocacy, passion, and leadership has greatly furthered the mission of OSSA by promoting, assuring, and protecting the integrity of Support Services for adults with intellectual and developmental disabilities statewide. We’re excited to announce that beginning in February 2015, Katie Rose will assume the Executive Director role full-time. Katie will be leaving her position of six years as the Director for the Mentor Oregon Brokerage presently serving individuals in the greater Portland area. As OSSA Executive Director, she will report to the OSSA Board of Directors, which consists of the 13 directors of the Oregon Support Services Brokerages.

Katie can be reached at beginning February 1, 2015. Stay tuned for additional contact details.

If you’d like to learn more about the association, please visit us at

eXPRS Trainings for Personal Support Workers Scheduled in Portland Metro and Mid-Valley Areas

In January 2015, the Oregon Department of Human Services is putting on a series of trainings on their electronic billing system eXPRS. The trainings are specifically geared toward Personal Support Workers. You may attend a training at any of the sites below, whether you serve individuals at the particular brokerage or county. Be sure to RSVP by emailing

Please note: RSVP-ing in the comments section below does not guarantee you a space at one of the trainings. Please email to reserve your spot. Thanks!


PSW TrainingsMidValley

Today: Brokerage Association Director, State DD Director and Provider Organization Director Talk I/DD System Changes on OPB’s Think Out Loud

Tune in today at noon on Oregon Public Broadcasting- OPB‘s Think Out Loud. Listen in as brokerage association Executive Director Kathryn Weit, ODDS Director Lilia Teninty and provider organization director Shanya Luther discuss changes to Oregon’s intellectual and developmental disability services.

From OPB: Oregon’s system for delivering home and community-based services to seniors and people with disabilities is in the process of being completely overhauled. The state has said that the new system will increase the amount of funding provided by Medicaid for disability-related services and give individuals more choices in how and where services are provided. Parts of the system are already in place, and parts are still in the process of being rolled out.

This overhaul is a component of the Affordable Care Act, and Oregon is one of the first states in the country to implement it. 


An Update on Systems Vision and Direction from Brokerage Association President Margaret Theisen

On Monday, November 10, 2014, Kathryn Weit, OSSA Executive Director and I participated in a vision and values discussion organized by the Office of Developmental Disabilities Services and the Oregon Council on Developmental Disabilities. Later in the day I stopped on the way home for groceries and when asked how my day was by the clerk, I said my day was excellent.  I can’t recall the last time I said that about work!  I surprised myself with that comment.

We spent an entire day discussing and refining the language for the values and vision statements that will be used to guide the system that provides services to people with Intellectual / Developmental Disabilities. The people attending the meeting represented all parts of the DD system, including State staff, and all were highly engaged, respectful and positive. It was the first meeting with a constituent group in my recent memory that was not dominated by complaints, whining, and finger pointing.

We don’t have final outcomes on vision or values statements, but within a week we will have the vision statement and we will have values work after that.  I feel very inspired by the day, and I am eager to see the final vision product by the work group.  When that is done later this week, final definition of the values statements we worked on will go forward.  I am on that work group with 6 people including Lilia Teninty, the State DD Director. Finalized, these statements will be shared widely and used to guide future decision making.

Next steps include scheduled discussions on Medicaid and the K Plan with Robin Cooper, an expert on these issues from The National Association of State Directors of Developmental Disabilities Services in Washington DC. Once we increase our knowledge base with, and understanding of Medicaid and K, Lilia plans to pull together groups to address specific topical areas beginning with case management.

I think Lilia is very much on track and as always, Bill Lynch’s facilitation was important and focused.  While our work didn’t address many of the day-to-day issues we are struggling with, I feel more confidence in our direction than I have in over two years!  I think Monday was a great start to a different/better future!

Margaret Theisen, OSSA President

OSSA/Brokerage Positions on K Plan Implementation; DHS Response to Concerns

positionpaperpictureOn June 12th, 2013, several brokerage directors met with Erinn Kelley-Siel (Director of the Department of Human Services), Tricia Baxter (Chief Operating Officer for Aging and Disability Programs) and Patrice Botsford (Director of the Oregon Office of Developmental Disabilities Services) to discuss concerns related to planned changes to services for brokerage customers and individuals throughout the system. During the meeting, we shared a formal position document (see below*) outlining concerns, questions, and recommendations. Given the significant amount of systems change occurring in Oregon right now, the paper touched only on high level, immediate issues.

Within a week of that meeting, Erinn, Tricia, and Patrice followed up in writing on each of our concerns and their responses are included below. Some questions have now been answered and others are still in process. We appreciate the Department’s willingness to meet with us, their openness to feedback and input from the field and we look forward to regular, ongoing engagement on forthcoming changes and implementation strategies.


*Positions and Recommendations on the K Plan, Its Implementation, and Additional Department-mandated Changes (June 2013)

OSSA (Oregon Support Services Association) is a non-profit organization comprising the thirteen support services brokerages in Oregon. Collectively, the association represents over 7,000 adults with intellectual and/or developmental disabilities (I/DD) who live independently throughout Oregon’s 36 counties. Brokerages have been in operation since 2001 and OSSA since 2010.

We envision a world in which all people live the life they choose in communities where they are valued, respected, and honored. In this world, individual strengths are celebrated; high quality supports are ample and readily available; labels are absent; and self determination is universal. This vision is realized from neighbor to legislator.

Present Situation: Community First Choice State Plan (K Plan) Implementation

In June of 2013, responding to budgetary shortfalls and weak findings from a statewide CMS audit, the Oregon Office on Developmental Disabilities (ODDS) sent its Community First Choice State Plan Option K (K Plan) application to the federal government for approval. The K Plan, if approved, will bring a 6% increase in federal match funds to Oregon. ODDS has formed workgroups and brokerage representatives have participated over the last month and a half.

This paper is an effort to capture the support services brokerage perspective in a publicly available set of thoughts, concerns, and issues surrounding the K Plan and its implementation in Oregon.

OSSA supports many of the aims of implementing the K Plan including:

  • Bringing additional federal funding into our state to preserve services for Oregonians with support needs
  • Developing options for fluidity and portability across service elements
  • Expanding of choice to the I/DD community

Additionally, OSSA has specific concerns about current implementation strategies including:

  • Ensuring the principles of self-determination are at the foundation of implementation
  • Offering true choice in Targeted Case Management across the system
  • Lack of extensive testing of the Functional Needs Assessment prior to implementation and the potential repercussions on populations (e.g. people with autism) whose needs it may fail to capture
  • Quality assurance review and customer/brokerage authorization of services prior to provider payment
  • Significant loss of flexibility caused by changing from annual benefit levels to monthly fixed allotments
  • Long term fiscal sustainability

Ensuring the Principles of Self-determination are at the Foundation of Implementation
In developing a new service delivery model, it is important to validate the importance of self-determination as the cornerstone of Support Services, and not just a salvaged component of yesterday’s service delivery model. We support a model that honors the aspirations of the individuals while adhering to the funding criteria that brings needed federal matching funds to Oregon’s Medicaid funded programs.

We believe that there is room for both. A person centered service delivery model based upon the principles of self-determination relying upon a Functional Needs Assessment to determine the disability related supports that are available in pursuit of life goals is a workable model.

Recommendation: We recommend that ODDS continue to commit to retaining the principles of self-determination as defined in statute and rule to drive planning and implementation of the Community First Choice State Plan Option K. We recommend that the Functional Needs Assessment exist in a supportive role to determine those disability-related expenditures available in support of self-determined life goals.

DHS Response: The Department agrees. Person-centered planning and self-determination are foundations of the I/DD system. Although the functional needs assessment is required, plans will continue to be developed in support of an individual’s life goals with the functional needs assessment driving the ADL and IADL supports necessary to support the individual in achievement of their goals.

True Choice in Targeted Case Management Across the System

In the current system, CDDPs provide Targeted Case Management (TCM) to children and adults receiving comprehensive care. In addition, they serve a small number of people receiving In-Home Comprehensive Services. Brokerages currently provide TCM exclusively to adults with I/DD who live independently in the community (support services).

Over the past couple of months, ODDS representatives have stated that CMS is “mandating choice in who provides TCM” under the K Plan. We are told that, per CMS mandate, customers must now be offered the choice of a CDDP case manager OR brokerage Personal Agent for support services.

When reviewing the system as described we find the decision to offer choice only in one area (support services) puzzling and inconsistent. As you see below, choice is decidedly limited to just one subset of the recipient base – the program recipients brokerages currently serve. Recipients in all other service elements continue to have no choice in who provides TCM.

Brokerage Provides TCM CDDP Provides TCM
Support Services

In Home Comprehensive


Supported Living

“Not in Service” Case Management

Child Case Management

Family Support

The vast majority of brokerage customers currently have at least two different entities providing Targeted Case Management to choose from. Many have four or five choices. Customers in every other service delivery program in the state currently have no choice. The proposed change marginally increases choice for a small percentage of brokerage customers while continuing to leave half or more of Oregon’s I/DD population with no choice whatsoever.

Further, we are concerned about conflict of interest free choice counseling under the new proposal. We understand that there have been conversations about third party choice counsel for people entering adult services. While we welcome any attempted neutral approach to assuring appropriate counsel, we are concerned about the viability of neutrality in a system that offers choice only to a select group.

An example: We think this model’s flaws are particularly evident during the period when recipients transition from child to adult services. Turning 18 is a time of enormous stress and change for an individual and his/her family. They are dealing with becoming their own decision-maker, an independent signer and they no longer have a de facto guardian. Further, they are applying for Social Security, updating their Medicaid status and possibly undergoing additional eligibility testing related to their I/DD diagnosis. Additional changes, particularly changing case managers, during such a period of upheaval seems an unlikely preference for most families. Real choice should be offered from the beginning so that people have time to form and maintain their relationship with their case manager, be they from the CDDP or the brokerage.

Recommendation: We recommend that ODDS provide universal choice by permitting brokerages to provide targeted case management in all service elements serving people with I/DD (including children). In the absence of full choice, we believe ODDS should create a distinction between CDDP and brokerage case management by assigning facility-based services to CDDPs and community-based adult services to brokerages. Our recommendation is consistent with the Oregon IDD Coalition’s recommendation on this topic.

 DHS Response: There is a statutory change that would be required in order to allow brokerages to serve children under the age of 18. However, as noted in the revisions to the chart (below), brokerages will be allowed to serve In-Home Comprehensive and “Not in Service” Case Management individuals. Residential and Supported Living services are to be phased in at a later date. It is the intent of ODDS that brokerages will be allowed to serve these populations within the next 12 months. Full choice of service providers (CDDP or Brokerage) will be given to individuals in all areas, with the exception of services related to children. This is a statutory change that can be explored during a future legislative session if so desired.

ODDS has added updates to the chart. Please see below:

Brokerage Provides TCM CDDP Provides TCM
Support Services

In Home Comprehensive




Supported Living


“Not in Service” Case Management


Child Case Management

Planned, pending statute change 

Family Support

Planned, pending statute change  

Functional Needs Assessment Development and Testing

ODDS representatives have been developing a new Functional Needs Assessment tool (FNA). Under the K Plan, services and supports are based upon a tool designed to determine a number of hours of service. Because this is a Medicaid requirement, it has been placed front and center as the driver of services. While we respect the necessity of the FNA, we believe the drivers of services should continue to be self-determination and the individual’s aspirations for his or her own life.

A person centered planning process based upon self determination is first and fundamental. From there, the FNA acts as the funding mechanism enabling the provision of disability-related supports to meet the aspirational goals of the individual, not the other way around.

We believe that an assessment tool intended to be placed at the center of all individual service decisions should be supported by comprehensive testing and computer modeling prior to implementation. The FNA has not yet been subjected to either. Data and real-word application should be established in advance of placing thousands of individual lives at the mercy of any assessment mechanism.  We have particularly strong concerns that some needs related to autism, behavioral and psychosexual disorders in particular will not be effectively articulated in the FNA form. Testing will allow for thoughtful examination of the value the FNA may bring to our Employment First and Executive Order requirements.

Our understanding is that the FNA will not be linked to rates on the comprehensive services (24/7) side during initial phases of implementation. We support this approach and ask that similar caution be taken on the support services side. Such an approach allows for testing and modification without disrupting the lives of recipients or the businesses of those who serve and support them.

A great many of our customers have exactly the same needs as those in 24/7 settings such as group homes and foster care homes. While the average brokerage customer has a budget of $14,000 per year, a full 7% of our customer base has been assessed through the Base Supplement Criteria Inventory process. They receive an enhanced budget between $20,000 and $24,500 per year due to extensive needs with personal care, caregiver capacity, behavioral support needs, and other high level support with activities of daily living.

Recommendation: We recommend a minimum 20% sampling of brokerage customers be tested to prior to formal implementation to determine a baseline from which to budget and consider future options, as well as to address employment and specific disability support issues. It seems the legislature and other administrative staff would require something of this sort in order to budget appropriately for Oregon’s future. There are very real fiscal and human repercussions at play here. We will partner in any way possible to help Oregon achieve this aim.

DHS Response: The department agrees that the new functional needs assessment is going to need extensive field testing and we appreciate the offer of brokerages to assist in this effort. We anticipate having a draft ready for some testing as early as the week of June 24. Testing the tool with individuals that we already know will be of great benefit. Initially the new assessment will be used for new people coming into service, and for existing individuals as their assessment renewal is due. This needs to begin on July 1, assuming CMS approval for a July 1 effective date, however, we know that the tool will be a work in progress and will need modifications as we gain experience in utilizing the tool with the I/DD population.

Pre-Payment Review and Quality Assurance

Since brokerages first began operation in 2001, we have always practiced high standards of quality assurance by reviewing direct services documentation prior to payment to qualified providers. Every single invoice, timesheet or bill is reviewed by the Personal Agent prior to payment. In order for us to move forward with payment, we must confirm:

Customer (or legal designee) signature confirming services

  • Progress notes confirming Medicaid-allowable services and how they relate back to the individual’s disability-related support need and person-centered goal
  • Units, rates, and dates that fall within the terms of the service agreement between the customer and the provider

The review of these invoices offers an immediate opportunity for education, feedback and correction when necessary. We currently employ a proactive approach and work with the customer and provider to assure CMS and state mandates are met. Not a single invoice, timesheet or vendor bill is paid in any of our thirteen organizations without thorough review and vetting.

This process permits us to do everything from fixing a basic pro-ration error to identifying fraud. Close review of these documents has led to protective service investigations, sanctioning of fraudulent providers, and the immediate intervention to address health and safety concerns.

Currently, these strong quality assurance mechanisms are at risk for a major change. As ODDS moves the brokerage plan of care into its payment system (eXPRS) there has been serious consideration given to permitting providers to go directly into the system to claim payment, bypassing essential quality assurance review and oversight. We have been told that we could do a “statistical sampling every three months or so” and follow up on errors after the fact.

We strongly object to a pay and chase system such as this and believe it’s at odds with CMS’ general shift over the past several years. By reviewing these documents ahead of time, we’re playing a proactive role not a reactive one. We believe this approach is consistent with the Department’s core values and practices.

Recommendation: As fellow custodians of public funds and strong believers of fiscal accountability, we urge ODDS to continue to permit brokerages to provide quality review on 100% of invoices, timesheets and bills received prior to payment to providers through the state’s payment system. The current processes within the brokerages have been proven to be principled and effective in financial management. 

DHS Response: The department has already revisited this decision and will be building functionality into the eXPRS system to allow for review and approval by brokerage staff prior to payment being issued. Brokerages will be able to determine their business process for accomplishing this task, including requiring customer authorization, invoices, etc. No payments will be issued without brokerage staff review and approval.

Monthly Fixed Allotments Versus Annual Benefits

In the current system, when a brokerage customer enters services, he/she has an annual benefit amount of around $14,000. She can purchase supports when she likes, as required based on disability-related needs. This sometimes means  she needs zero services for X months and then needs a significant number of services during, say, the summer. The current system allows for her to utilize her services when she needs them based on current availability of resources both paid and not paid.

Under the K Plan, there’s no such thing as an annual benefit cap. The Functional Needs Assessment (FNA) determines how many hours a person is eligible for per month. If you don’t use it, you lose it. For twelve years, brokerage customers have been operating under the annual benefit and have enjoyed the flexibility to meet real-life needs such a system allowed. In our discussions with customers and family members, this is a primary area of concern right now.

Recommendation: We understand that the monthly versus annual budgeting model is an Oregon design decision and not something mandated by CMS under the K Plan. We recommend maintaining utmost flexibility for those receiving services and therefore a customer budget developed on an annual basis. Programs should be crafted to fit the needs of people. When we attempt the inverse, the system can’t meet needs in the moment and small issues become compounded. People lose options and control.

DHS Response: With the implementation of the “K” State Plan Option, individuals will receive the supports that they need each month. In essence, the idea of monthly or annual budgets goes away – individuals will be authorized for services determined to be necessary through the functional needs and service planning processes. This means individuals with support services can budget at an annual level if that works best for them.

Long Term Fiscal Sustainability Concerns

Prior to 2001, services for adults with I/DD in Oregon were pretty much limited to those with significant need. People living independently (with family or on their own in the community) received very little by way of services and this resulted in a lawsuit brought by concerned families (Staley v. Kitzhaber.) As a result of the 2000 Staley Agreement, a new way of providing services was born. Enter the brokerage system. Well over 7,000 people have enrolled in brokerage community-based services statewide in the last decade. Most people have somewhere around $12,000 to $14,000 available to them annually through their brokerage. This model doesn’t provide for every single need – but it does provide support to every single eligible individual.

Our concern is this: We serve people with very significant support needs, far beyond anything brokerages can fund. Family members, neighbors, friends, partners, community members and spouses play a role in each person’s support system. They provide natural supports to the individual to ensure his/her success without creating dependency on a paid system. A person, whose plan is currently $14,000 per year, could easily be reassessed and suddenly that plan will pencil out to $75,000. Conversely, those with $14,000 today could shrink to $3,000 tomorrow.

While we absolutely support the concept of providing disability-related support wherever needed, we must also consider what our budget can sustain over time. Proper assessment of available natural supports is key to the long-term sustainability of our service delivery system.

How do we avoid reinventing the system we deconstructed just a little over a decade ago? If costs grow beyond what Oregon’s budget can handle, what happens? Do we start re-determining eligibility for these services? Do we start leveling individuals? Do we begin eliminating people from accessing services (as we did with General Fund customers) so that they go back to relying on emergency state and county systems? Do we say “this year we serve people in levels 1 – 12, but next year we can only serve 1 – 10?” Oregon has done it before with Oregon Health Plan and we fear it will happen again here. Do we recreate a system where we can only afford to serve Oregonians with the highest needs while categorically denying services to those with perceived “lesser needs”?

One of the most fantastic features of brokerage services has been creating an environment where individuals who had little exposure, integration and inclusion in their communities were finally afforded the opportunity (via disability-related supports) to fully participate. That has been of immeasurable benefit not only to the individuals who are now participating, but to society as a whole. When communities are exposed to people with I/DD, societal opinions, prejudices and assumptions change. We have thousands of people with limited support needs now engaging and flourishing in their communities. We cannot roll backwards – we must ensure the new system serves all people with I/DD, no matter how “limited” their support needs might seem to the outside world. Oregon has made promises to this population and we must make good on them.

Recommendation: Again, we recommend extensive testing on the Functional Needs Assessment prior to formal implementation.

DHS Response: The department shares this concern and will be watching expenditures very carefully. Our hope is that we will be able to serve more individuals in the community, costing the state less in the long run. Thorough testing and ongoing review of the assessment tool and associated service plans will be a must.

Closing Comments

The Oregon Support Services Association membership has effectively managed significant changes throughout the twelve year history of brokerage services. Today, change is present on all fronts. We are prepared as always to adapt to the next system. By communicating concerns and offering solutions, we hope to create a dialogue whose end result maintains and hopefully enhances services for the more than 7,000 adults with I/DD we currently serve.

Download a PDF of the Position Paper and DHS’s response here: DHS Response to Position Paper from Support Service Brokerages 6 18 13