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Universal Access - A History in Oregon and Benton County

You probably have heard that the Waitlist Settlement, based on a class actions suit will start a new program for persons with developmental disabilities. Also known as the Staley et al. lawsuit, and “Universal Access”, the program’s benefits have been outlined in The Arc-Benton newsletter in recent months. Basically, the program helps fund individual supports of clients, and provides resource information to those eligible. The State Planning group has met for the better part of a year to design a service model that can implement the conditions of the lawsuit. The State DD office, the plaintiffs and families, and local DD Providers are excited about the possible opportunities; there is a buzz in the air. The Settlement brings a major change in the amount of benefits available, how benefits are distributed to those with disabilities, and the amount of “choice” a person has in selecting services.

The State Planning process has helped clarify what the lawsuit language means, and how the Settlement will affect us locally. Some of the main points/clarifications include:

1. Universal Access is a misleading term. Persons eligible for the new “Supports” program will be those persons with developmental disabilities, who are adults, and are considered “waiverable” by Federal Medicaid standards. (A person’s case manager would know if he/she meets the definition). In Benton County, approximately 100 persons of the presently 330 clients will be eligible for the new program. Persons who are in State funded residential 24-Hr. services (e.g. group homes, supported living, and foster care) will not be eligible.

2. “Supports” services will be coordinated primarily by one or more agencies called “Brokerages”~ The agency or agencies will likely be new to our area, and will assist individuals/families through resource information and financial supports for individual needs.

3. Start-up on July jSt 2001 was optimistic. Services cannot officially start until the State and Federal governments have an agreed upon start date. Locally, a gradual start-up will likely occur in 3-6 months. It appears it will take at least the first year to have all the pieces in place, and have the Settlement implemented across the entire State. The lawsuit refers to full implementation to occur over the term of the lawsuit, that is 6 years.

4. Who will assist with local needs in the interim? In the interim, the Self-Directed Supports Staff and D.D. Case Managers are to assist in plan development. The D.D. Case Managers will refer clients to the Brokerage agency when the service system is up and ready.

5. What will be the “average” stipend? Financial awards will be based on individual support needs; the Brokerage will handle payment of services. The goal is to serve as many persons as the budget will allow. $800/month has been quoted as an “average” amount, but this is misleading, as persons with exceptional needs will also need services. Discussion at the State is to have the “average” significantly below the $800/month figure.

6. Who’s served first? Discussions continue on this issue, but it appears that those individuals on the County waitlist, or who are presently served by Self-Directed Supports, or High School Transition (vocational) programs will be served first. It is recognized that persons with older parents may also need additional supports.

7. What is available to other clients who are not Medicaid eligible, or not yet adults? Non- Medicaid adults may be able to access a smaller fund of money per month; (funding would be based on the State’s “general fund” dollars and not federal money.) Planning is continuing for a children’s fund; there is no final decision to date. It is hoped that a program similar to Family Support will be initiated; funding would be considerably less than the Waitlist Settlement budget.

Eligible clients/families, and D.D. Providers continue to have numerous questions about what the eventual Waitlist Settlements “Supports” program will look like — and rightly so. There are many steps to take and deadlines to meet before all the pieces fall into place. Implementation of the Settlement in Benton County will be based on several factors, some of which are listed below:

• End of June: Proposals due for Brokerages to apply to State
• July 25th & 26th the Brokerage selection process begins. Proposals will be reviewed by a panel of State and regional or local representatives.
• August 25th Waiver Agreement: This date reflects when the State & Federal governments agree to terms and these terms underwrite the Settlements funding, and the State’s responsibilities.
• State-Brokerage(s) contract: Negotiated contract terms are needed on what specific services each Brokerage will provide, and when they can start.
• Money sent to Brokerage(s): Money will be sent to the Brokerage(s) within 30 days after the signed contract. Client “supports” funding will be separate from the Brokerage(s) operational dollars, so that a client’s “supports” funding will not have to pay for the cost of the Brokerage’s staff.
• State rules drafted: The State is forming committees to write the rules on what each agency is to do, the documentation needed, client involvement, and choice, etc. Scheduled completion is in September, with more scheduled for December.
• Training of all stake holders: The State will train local agency staff on how to fill out forms, what qualifies for waivered services, etc.
• Rate of start-up: The selected Brokerage(s) will not be able to accept all the referrals at once, so a gradual referral process will need to occur.

Please note that the above is in very brief form, but is a beginning attempt to share with you the many steps left and timelines involved in the State’s start-up. Locally, both the D.D. Case Managers (766-6847) and the Self-Directed Supports Staff (753-1711) are available to answer any questions you have in the meantime. We’re all working towards having the new “Supports” program start as soon as possible.

The Waitlist Lawsuit Settlement Agreement
The Waitlist Lawsuit, filed in January 2000, alleged that people with developmental disabilities have a right (are entitled) to Medicaid services and supports appropriate to meet their needs and that, per the ADA, those services must be provided in the most integrated setting. After nine months of negotiations, a Settlement Agreement was reached.

While the lawsuit began with six individually named litigants, The Arc of Oregon was added as a litigant in May2000. A major result of the negotiation however, is that the lawsuit is being converted to a Class Actioni subject to federal court approval. Making this a Class Action ensures that every adult who qualifies for services from the state DD office will be covered by the outcomes of the Agreement. Each person will receive notice about the Class Action and have the opportunity to tell the judge what they think of the agreement. In the meantime, activities are stirring around the state in moving ahead to get services set up for people.

The Arc of Oregon is hosting Town Hall Meetings all across the state to assist individuals, families and professionals in understanding the agreement. The Office of Developmental Disability Services is participating in this event, as well as setting up meetings to get the new system of services started. There will be a lot of unanswered questions for a while, but planning has started to make certain that the terms of the Agreement are met.

What this means for individuals and families First and foremost, the state cannot reduce funding or eliminate current services to adults and children. There will be Universal Access’ to services and supports for all adults (and some children) who qualify for DD services. This means everyone who qualifies, receives some level of support.

Support services will be the main gateway for access. All eligible adults will be receive Support services. The state has projected that costs for Supports to individuals will average about $9,600 per year, however the Settlement Agreement does cap costs for support services at $20,000 per year.

“Universal to services and supports means services can be accessed statewide by all eligible individuals and their families, wherever they live In
Oregon. Access to services and supports breaks out into two major groupings:

SUPPORT ($20,000 Cap)

• Case Management
• Personal Care
• Daily Living Activities
• Respite Care
• Employment Supports
• Community Activity
• In-Home Supports
• Community Inclusion
• Transportation
• Minor Environment Adaptations

COMPREHENSIVE

• Case Management
• 24-hour Out-of-Home
• Group Home
• Supported Living
• Foster Care
• Intensive In-Home
• Employment Services
• Community Activity
• Transportation
• Environment Adaptations

Comprehensive services will continue to be available when a crisis arises and needs cannot be met with more Support services. In addition, 50 people per year will move into Comprehensive Services through non-crisis access. Rules are to be developed setting the priorities for how those 50 people will be identified, however, initial discussions include offering services to the oldest caregivers first.

All services and supports will be delivered based a personal plan, developed by the person and their family and friends (wow! this might just look like self-determination!), along with case managers and/or service coordinators. In order to bring everyone into Support services in the most feasible way, Supports will be phased in over the first four years of the Agreement, beginning July 2001.

Family members and individuals will be a part of the planning and rule-making process for carrying out the Agreement. They will also maintain the right to appeal decisions made by the state regarding Individual eligibility and services.

What this means for Self-Directed Supports (SDS)

People currently being served by SDS will continue to access services/supports. Lessons learned while developing local SDS services will be an important part of developing the new service system. People serving on the local SDS councils will have the opportunity to be a part of the planning rule development and implementation of the system. The Agreement Indicates that such planning groups would be regional, instead of county by county.

What this means for traditional providers
Traditional providers will continue to provide the quality Comprehensive services they currently provide. Since the current individual services cannot be eliminated and the funding cannot be reduced to pay for the Agreement, the traditional provider remains a vital part of the system. They will even have the opportunity for expanding services to those new individuals coming into Comprehensive services on a non-crisis basis.

Providers will be part of planning the new system of service and have the opportunity to be a Support service provider in any number of ways. They may employ Support staff, act as employer of record, handle financial duties, provide training and much more.

What this means for administration
Serving all adults will require oversight and responsible financial reporting, especially when using public funds. Expansion of case management along with its supervision, as well as financial and data tracking, will greatly increase the responsibility of county regions and state offices.

Ensuring the terms of the Agreement are met, requesting money to fund the services and reporting on who has services and who is waiting are all
responsibilities of administering this systems change.
BUDGET EXPECTATIONS
(These are best estimates of expected expenses and Medicaid match. Inflation is not calculated in the estimates. Dollar amounts are stated In millions.)
Total Six Year Budget Estimate $349.8
Federal Medicaid match (59%)$206.4
Oregon General Fund $143.4
Non-Crisis ComDrehensive Service Slots:
300 adults $36.9
Support Services ($20,000 per year cap):
3,400 adults $138.0
1,300 children $39.3
Building Capacity:
Service Brokerage start-up $2.4
Case Management expansion $84.9
Regional/Local State administration $32.6