Response to NWA Democrat Gazette Editorial "Handle with care; Mend these institutions, don't end them"

The Arkansas Waiver Association, an association of advocates, persons with developmental disabilities, their families and professionals who promote the provision of quality, integrated supports within a community-based setting, would like to respond to the recent editorial, Handle with care; Mend these institutions, don’t end them, in which it was recommended that the “whole picture” be looked at during any discussions about the future of Human Development Centers in general, and the Booneville HDC in particular. Unfortunately, the editorial failed to heed its own advice, and did little to inform the debate on the issue.

The piece began with the presumption that many of the country’s institutions for individuals with intellectual and development disabilities are being shut down for reasons that “don’t make sense on closer inspection”. One example was penny wise but pound foolish economizing. A closer inspection would find that many closures were both penny and pound wise. Given their fiscal constraints, it has become increasingly difficult for states to justify the high cost of institutionally based care, especially when so many other individuals with similar needs are unable to access any services or supports. It was also noted that institutions in some states have been closed as a result of lawsuits. This is true. In some of those cases, the closure was ordered because of the horrendous conditions, and the instances of abuse and neglect, within the institution. 

Further stating that institutions have been closed as the result of court decisions grossly mischaracterizes the reality of those decisions. The U.S. Supreme Court’s ruling in the Olmstead v, L.C.  case held, among other things, that “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life” and “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.” The Court also stated, “We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.”

In accordance with this jurisprudence, courts have not ordered the closure of institutions, but have required states to increase the availability of community-based treatment options for any residents who want to transition out of an institution, or for those individuals at risk of institutionalization who wish to remain in their community. The result of such court orders is that many institutionalized individuals have chosen to transition from an institution to a community-based setting. As institutional populations decreased, many states have chosen to downsize, consolidate or close their institutions. In such circumstance, to insinuate that such orders were issued by a court that was “inclined to act thoughtlessly” is insulting and disrespectful to the court that was following the rule of law. 

Equally outrageous was the speculation that if a Human Development Center in Arkansas was closed, the residents would be in great danger of being left to fend for themselves, potentially winding up on the streets or sleeping on grates. The statement reflects an appalling lack of knowledge about Arkansas’ current system of care for the intellectually and developmentally disabled, and is highly insulting to the Superintendents and staff at the HDC’s, the entire Division of Developmental Disabilities, and the professionals and families represented by the AWA. When residents transition out of an HDC, as they frequently do, they are not escorted to the front gate and left to fend for themselves. The resident is placed in one of the programs administered by the State that furnish community-based services and supports to individuals with disabilities. The individual winds up sleeping in the family home, a private residence or a group home. Regardless of the setting, the services and supports provided the individual are designed to ensure their health and safety, which includes personal care staff when they go out on the streets of their new community. No one gets abandoned; they get supported.

For far too long, the debate about the State’s overreliance, relative to most other states, on institutions to serve individuals with disabilities has focused on whether or not the quality of care is better and/or cheaper when provided in an HDC versus a community-based setting. The AWA agrees with the Stephen Group that, in general, the quality of care provided in the HDC’s is very good. The AWA also believes that, in general, the quality of care available in a home and community based program is equally as good. Neither setting is inherently better able to furnish quality care. In all cases, the quality of care provided reflects the skill, training and supervision of the people furnishing the care. Likewise, one setting is not inherently less expensive than the other. Both HDC’s and community-based providers are capable of meeting the needs of Arkansans with intellectual and developmental disabilities.

If this is the case, then why is there an ongoing debate? As suggested in the editorial, we need to look at the whole picture. In the words of Dirk Wasano, an individual with disabilities, "In the 1960’s and earlier we were treated like plants. You fed us, clothed us, kept us warm, and wheeled us out to feel the sun. In the 1970s and 80s you discovered we could be taught—we could learn—and we were treated like pets. You taught us all types of tricks and we stood by your side. But now . . . Here we are. We are not plants. We are not your pets. We are people like you and we want to be treated as real people. We want the same opportunities as anybody". 

What We the People of Arkansas should be focusing on is choice. An individual with a disability is entitled to full inclusion within their community, with all of the privileges and opportunities to determine, and achieve, the goals in life that are uniquely theirs, just like every other citizen of Arkansas is entitled to receive. It is not the prerogative of the State, family members, guardians or anyone else to decide what someone else’s quality of life goals should be. Regardless of a person’s cognitive level, they should be afforded as much control, or choice, over their own lives as is possible. To do this, we must do more in the way of truly asking people what is important to them. We must encourage them to become fully included in their own community. We recognize that, for many individuals, an institution is the only community they have ever known. If it is truly their choice to remain in an HDC, we should respect their choice. 

The moral of the editorial was that we should look before we leap. To the extent that We, the Nondisabled, People of Arkansas, believe that we should have the right to choose the community in which we live, and how we want to live our lives, we must take whatever steps are necessary to ensure that intellectually and developmental disabled Arkansans are given the same rights and opportunities. HDC’s may be an important component in the continuum of care, but with thousands of Arkansans on a wait list to receive services or supports within their communities, simply maintaining the status quo cannot be justified. Having thoughtfully looked at, and considered, all of the issues, we judiciously conclude that now is the time for Arkansas to take the leap that boldly moves the State into the 21st Century.


Stateline Article on What Happens to the Developmentally Disabled When Parents Die

It is a question every parent of a child with a developmental disability has. The question is fraught with even more stress for the parents of children still on the waiting list, especially as they begin transitioning out of their teen years into adulthood. 

Stateline has a great article on this very issue which you can read here: What Happens to Developmentally Disabled as Parents Age, Die?

This week is the 26th Anniversary of the ADA

This week Arkansas Waiver Association is celebrating the 26th anniversary of the signing of the Americans with Disabilities Act. We want to recognize how far we have come and how far we have to go. The ADA advances equal access for all persons in this country and we want to celebrate that.

Even though the ADA has been the law of the land for 26 years now, there are still places all over the state that have yet to even install ramps for people in wheelchairs, allow persons with service dogs into their places of business, and have failed to provide translators for those with hearing impairments.  The most outrageous aspect of a failure of full implementation of the ADA in Arkansas is the continuing existence of the Alternative Community Services Waiver Waiting List.

Right now there are nearly 3,000 Arkansans with developmental disabilities that are waiting for services the United States Supreme Court says they are owed thanks to the ADA. Some of these people have been on the waiting list since 2007. Since 2013 79 people have passed away while waiting for services on this list. For more information on that watch this video

In recognizing the achievements of the past 26 years with ADA we call on the elected leaders in our state to end the waiting list and allow these 3000 families to live in the community as they desire. 

DHS is Seeking Comment on the Following

The Department of Human Services is accepting public comment for the proposal on conflict free case management laid out below. Comments can be given at this link:


Renewal and Redesign of

Arkansas’s Home and Community Based Services for Individuals with Intellectual and Developmental Disabilities: 

Conflict Free Case Management



A Concept Paper for the 

Centers for Medicare and Medicaid Services 

for Review and Input


Renewal and Redesign of Arkansas’s Home and Community Based Services for Individuals with Intellectual and Developmental Disabilities:

Conflict Free Case Management


Executive Summary

This paper summarizes proposed changes to the State of Arkansas 1915(c) Home and Community Based Services (HCBS) Waiver Program; specifically, changes to our current case management system.  These proposed changes are based on input received from stakeholders through individual in-person meetings, online comments submitted to DHS and a statewide community meeting held on February 2, 2016.  While we are transforming our system to comply with the Medicaid regulations surrounding case management, this creates a significant change to our system.  Therefore, we are requesting a phase in period.



Over the past few years, while attempting paths of Medicaid transformation, the Division of Developmental Disabilities (DDS) has operated the 1915(c) under a series of extensions. Currently, we are waiting for approval of our latest temporary extension request.  We understand the need for filing a Renewal. 

Arkansas is in the midst of transforming our Medicaid payment and delivery system, not only for DDS, but for our behavioral health and aging populations.  The Governor created a Health Reform Task Force and tasked the Arkansas Legislature to determine the best course of action for future Medicaid efficiency and savings.  The Arkansas General Assembly begins a special legislative session on April 6, 2016 and the direction of Medicaid reform is a priority.  We anticipate further direction at the conclusion of this session.  Based on legislative mandate, we will file necessary amendments to the 1915(c) ACS Waiver to align with that direction. 

On November 9, 2015, DDS requested approval from the Secretary of Health and Human Services to devise a series of conflict of interest protections that would allow recipients of our 1915(c) ACS Waiver to choose the entity or entities that provide direct care and case management services—even if the provider is one and the same.  On February 13, 2016 DDS sent a letter to CMS outlining the specific contentions and mitigation techniques. 

While DDS does not wish to restate those arguments, it is important to note that the majority of our current 1915(c) ACS Waiver recipients choose to use the same entity for both direct care and case management. Specifically, a report run in November of 2015, indicates out of 3,988 Waiver consumers only sixty-six (66) providers across the State of Arkansas were chosen to provide services under the 1915(c) ACS Waiver.  Most consumers choose the same provider for all services.  It is also important to note that Arkansas is a rural state with limited resources in many counties.  Under our 1915(c) ACS Waiver, entities can bill $117.00 per recipient per month for case management if the service is included in the person-centered service plan.  At only $117.00 per recipient per month, the rural entities cannot continue to operate if they are restricted in providing only case management to some recipients. 

Request for “Phase in” and the Arkansas Procurement Process

DDS currently administers a 1915(c) ACS Waiver that includes a broad array of case management services.  We currently define the scope of service as: “Services that assist participants in gaining access to needed waiver and other state plan services as well as medical, social, educational and other generic services regardless of the funding source for the services to which access is available.”  Furthermore, case management services involve responsibility for guidance and support in all life activities including locating, coordinating and monitoring the following:

  1. All proposed Waiver services;
  2. Other state plan services;
  3. Needed medical, social, educational and other publicly funded services (regardless of funding source);
  4. Informal community supports needed by eligible person and their families. 

In addition, case management is currently responsible for the following activities: 

  1. Arranging for the provision of services and additional supports; 
  2. Monitoring and review of services included in the individual’s service plan;
  3. Monitoring and review of services to assure health and safety of the participant;
  4. Facilitating crisis intervention;
  5. Guidance and support to obtain generic needs;
  6. Case planning;
  7. Needs assessment and referral for resources;
  8. Monitoring to assure quality of care and case reviews with focus on the person’s progress in meeting goals and objectives established through the case plan;
  9. Providing assistance relative to the obtaining of Waiver Medicaid eligibility and ICF/MR level of care eligibility determinations;
  10. Assuring the integrity of all case management Medicaid Waiver billing in that the service delivered must have DDS prior authorization, must meet required Waiver service definitions and must be delivered before billing can occur;
  11. Assuring submission of timely (advance) and comprehensive behavior and assessment reports, continued plans of care, revisions as needs change and information and documents required for ICF/MR level of care and Waiver Medicaid eligibility determinations;
  12. Arranging for access to advocacy services as requested by consumers;
  13. Upon receipt of DDS approvals and denials, ensures that a copy is provided to the individual or their legal representative;
  14. Provides assistance with appeals when an appeal is chosen. 

At $117.00 per person, per month, Arkansas providers contend there is a substantial monetary loss on every case management client they service.  Further, based upon stakeholder feedback, providers claim that the direct service side of the business subsidizes case management.  For these reasons, most providers will not agree to provide only case management services to certain individuals. 

We are asking for a phase in to continue the above scope of service in our 1915(c) ACS Waiver until a contract for case management is procured.  The contracted vendor will be responsible for several components of case management which will include: assessment of an eligible individual (42 CFR 440.169(d)(1), development of a specific care plan (42 CFR 440.169 (d)(2), referral to services (42 CFR 440.169 (d)(3) and monitoring activities (42 CFR 440.169(d)(4).  The contracted vendor will not provide direct care to Waiver recipients. 

Arkansas has a multiple step procurement process.  The process begins with the state writing a pre-solicitation memo for internal Department of Human Services (DHS) approval.  Upon approval by the DHS Director, DDS will draft a detailed Request for Qualifications (RFQ) with supporting documentation and obtain necessary approvals including the Governor’s Office.  All purchase requisitions for services with a total projected cost greater than $1,000,000 require approval from the Governor’s office prior to bidding.  The RFQ will be reviewed and approved by the Office of Chief Counsel to ensure adequate performance measures.  The review and approval of the request for qualifications can take several months.  

The RFQ will be approved and publically published by the Office of State Procurement for a minimum of 30 days.  At the conclusion of the 30 days, there is a 14 day anticipation of award period when bidders can contest the results.  Once the contract is awarded, there is a lengthy process to ensure the proper paperwork is completed between the DHS Office of Finance Administration, Arkansas Department of Finance and Administration and the awarded vendor.  Once the contract terms are finalized, the contract must be reviewed by the legislature.  

While no procurement process is exactly the same, we estimate that an average of nine (9) months is needed to complete the task. 


Interim Firewalls and Conflict Mitigation Strategies

Arkansas has implemented strategies and is currently working to implement additional firewalls and mitigation strategies to ensure conflict free case management until the contract is in place:

  1. Arkansas DDS will continue to make the eligibility decisions for the 1915(c) ACS Waiver.  This willinclude a level of care determination and an eligibility of financial need determination with Arkansas Medicaid;
  2. Clinical needs-based assessments are performed annually by providers.  Arkansas DDS will review those assessments prior to approving an individual’s plan of care;
  3. The individuals performing the annual needs-based assessments are not providers on the treatment plan nor do they provide direct care.  Arkansas DDS will continue to monitor to ensure individuals performing the assessments do not provide treatment or direct care;
  4. Arkansas DDS will continue to perform utilization reviews;
  5. Arkansas DDS will continue to review and approve/deny individual plans of care at the annual time of renewal or with any submitted amendment/modification;
  6. Individuals receiving Waiver services are encouraged to advocate or have an advocate present during planning meetings;
  7. The DDS Waiver Specialist will document that the individual has been offered a choice among all qualified providers for both direct care and case management services;
  8. Providers will continue to administratively separate between case management functions and staff and direct care functions and staff;
  9. Arkansas DDS is currently establishing a consumer council to monitor issues of choice;
  10. Arkansas DDShas an established and accessible means for consumers to file grievances/complaints and to appeal to Arkansas DDS regarding concerns about choice, quality and outcomes;
  11. Arkansas DDS Waiver Specialist and the Assistant Director of Waiver Services oversee all plans to assure consumer choice and control;
  12. Arkansas DDS has tools in place that measure consumer experiences and captures the quality of care. 



Arkansas DDS is requesting allowance to utilize firewalls and mitigation strategies until a contracted vendor is secured.  We estimate completion of this task by March of 2017.  Once secured, a contracted independent vendor will be responsible for several components of case management which will include: assessment of an eligible individual (42 CFR 440.169(d)(1), development of a specific care plan (42 CFR 440.169 (d)(2), referral to services (42 CFR 440.169 (d)(3) and monitoring activities (42 CFR 440.169(d)(4).  The contracted vendor will not provide direct care to Waiver recipients. 

Arkansas DDS asserts that the firewalls and mitigation strategies outlined above will ensure a quality of care for the Waiver recipients that we serve. We assert that potential conflicts of interest will be eliminated and providers will be closely monitored for compliance. 



Conference Agenda

"More Questions Than Answers: Waiver

Services in Arkansas"

2016 Annual AWA Conference

Thursday, July 14

8:00 a.m.- 5:00 p.m.




8:00 a.m.- 8:30 a.m.                Registration    Sign-In

8:30 a.m.- 8:45 a.m.    Welcome: AWA President Keith Vire, CEO, Arkansas Support Network

8:45 a.m.- 10:00 a.m.    The Changing Landscape of Human Services in Arkansas

    Cindy Gillespie, Director, Arkansas Department of Human Services 

10:00 a.m.- 10:15 a.m.            Break

10:15 a.m. – 12:00 p.m.            General Session: HCBS Transitions—Effectively Advocating                         for Quality Supports

                        Elizabeth Edwards,     Staff Attorney, National Health Law                             Program

12:00 p.m. – 1:15 p.m.             Lunch in Exhibit Hall A: Video—Waiting in Arkansas 

1:30 p.m. ‐ 3:00 p.m.                1: Breakout Session: When Waiver Supports are Denied:                                 How to Effectively Appeal Adverse Decisions  

                            Disability Rights Arkansas        

2: Breakout Session: Employment First—SE in Arkansas

                             DHS/DDS Special Program Administrator

3:00 p.m. – 4:30 p.m.                1: Medicaid Managed Care: What does it mean for our                                 State? 

                            David Jacobson, Vice President, Medicaid Business                                    Development and Strategy, Arkansas BlueCross BlueShield                               

2: SE Update: Transitioning from sub-minimum wage

 Chris Paslay, Production Manager, Abilities Unlimited,                                                                                                                                                                                                                                                                                      Jonesboro; Keith Vire, CEO, Arkansas Support Network


4:45 p.m.                    Wrap up and Final Questions

5:00 p.m.     AWA Membership Meeting followed by the AWA Board Meeting

5:00 p.m.                    ICM Open House

7:00 p.m.                     Dance, dance, dance (sponsored by ICM)



"More Questions Than Answers: Waiver

Services in Arkansas"

Friday, July 15

9:00 a.m. - 12:00 p.m.



9:00 a.m.-10:00 a.m.    Cindy Alberding, Penny Castilaw, and Melissa Stone

Kellie Jennings Memorial Award

Linda White & Chris Tebbetts

Wayne Fulmore/Tim Corbitt Self-Advocate of the Year Award

Presenter Here

Arnold Hurst Parent Advocate Award

10:00 a.m. -  10:15                 Break

10:15 a.m. – 11:00 a.m.            Special Needs Trusts and Estate Planning: Margaret Ward                             and Timothy Russell

11:00 a.m.- 12:00 a.m.             Q & A with DDS Director, Melissa Stone

Director, Division of Developmental Disabilities Services

12:00     Adjourn

Pre-Conference Agenda

"More Questions Than Answers: Waiver Services in Arkansas"
2016 Annual Conference
Pre-Conference Agenda
Wednesday, July 13

10 a.m. - 3:30 p.m., (working lunch included)
*Registration at 9:30 a.m.


Option 1:

“Questions: Waiver 101—How to Make it Work for Families” 

In spite of the many, many changes that are coming for the families we support, there will always be a strong need for excellent Case Management and Direct Support. This session is designed for Waiver employees who are new to the system, and will provide an excellent background for you as you begin your career. Our experienced AWA members will guide you through the basics of Waiver supports—from the initial plan to the provision of ongoing supports, you will learn the “how to’s” and the “what not to do’s” of Medicaid Waiver. 

The session will be facilitated by Cindy Alberding: 

Brenda Stinebuck, Director SAILS: The IL Movement & The ID/DD Communities, Making It Work Together To Promote Quality, Integrated Supports

 Roberta Sick, Director, Crime Victims With Disabilities Project - Partners: Violence Prevention In The ID/DD Communities

 Karan Burnette, Associate Director/AAP Director - Partners: Autism Waiver/ Autism Updates/News We Can Use



Option 2:

“Questions: Changes in Home and Community Based Services”

The Centers for Medicare and Medicaid Services recently published a new set of rules for the delivery of Home and Community Based Services through Medicaid waiver programs. Through these rules, the Centers for Medicare and Medicaid Services aim to improve the experience of individuals in these programs by enhancing access to the community, promoting the delivery of services in more integrated settings, and expanding the use of person-centered planning. 

In Arkansas, the questions surrounding these changes include the concept of “Conflict Free Case Management” and “HCBS Settings”. The “settings” standards: 1) require assurance of specific individual rights; 2) prescribe certain characteristics of the physical plant; and 3) specify steps which must be taken if any of the required conditions must be modified based on a specific assessed need of an individual. In addition, to these burning questions, DDS is working diligently to create a new category of supports through the initiation of a new limited support Waiver. 

This session will focus on ways that existing providers can meet or exceed these new standards, and will discuss Person Centered Planning in depth. 

The session will be facilitated by Josh Wilson, an AWA board member who has been involved in these discussions with the state for months, and will include speakers Charlie Green and Craig Cloud. 


Seeking Nominations

3 Awards Will Be Given at This Year's AWA Conference

Wayne Fulmore/Tim Corbitt Self-Advocate of the Year Award

This award was created to honor the work and legacy of John Wayne “Duke” Fulmore and Timothy Randall Corbitt. Wayne and Tim left us way too soon, but each left behind many friends and fellow advocates who honor their memory and who continue to benefit from their work in paving the way for those who come after them. We understand that, as we make progress in our work, we do so because we are standing on the shoulders of giants. Wayne and Tim were giants in the self-advocacy community. This award is given to a Self-Advocate for outstanding achievement.

The Kellie Jennings Memorial Award for Outstanding Direct Support Professional of the Year

The Arkansas Waiver Association believes it is important to recognize and support the dedicated direct care staff that makes the ACS Waiver a success. AWA will be recognizing the Outstanding DSP for 2016. The award is named for Kellie Jennings; who was responsible for the idea of recognizing outstanding DSP’s. If you have an exceptional DSP, please take the time to nominate him/her for this award.

The Arnold Hurst Award

This award honors the work of parent advocates statewide, in trying to further the mission of AWA, quality integrated supports.

Please send all nominations to this address:  Penny Castilaw - PO Box 219 Conway, Ar. 72033

A form for the Arnold Hurst Award will be available soon. See nomination forms below: 

 Right click to download form.

Right click to download form.

 Right click to download form.

Right click to download form.

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Right Click to Download Form

Strategic Plan For Services To Individuals With Intellectual and Developmental Disabilities


Stakeholders in the programs that provide long-term services and supports (“LTSS”) to individuals with an intellectual and/or developmental disability (“ID/DD”) have been asked to provide the Medicaid Task Force with proposals that would result in achieving substantial cost savings in the long-term care program related to individuals with ID/DD.

The Arkansas Waiver Association (“AWA”) is an association that seeks to promote quality, integrated supports to individuals with ID/DD in Arkansas. Our membership consists of advocates, persons with developmental disabilities, their families and the professionals who work in the field. Our membership is built around those who are served by, or work with, Arkansas' Alternative Community Services Home and Community Based Medicaid Waiver (“the Waiver”). 

The State of Arkansas is not currently meeting the LTSS needs of all individuals with an intellectual or developmental disability who desire to receive their services and supports in an integrated setting within their home and community. The primary program designed to provide LTSS to this group is the Waiver. The Waiver serves a limited number of individuals. There is currently a waiting list of around 3,000 people who are qualified, eligible and in need of Waiver services, but are not receiving Waiver services. Some individuals have been on the waiting list for as long as eight years. 

Given the degree to which the needs of all individuals with an ID/DD for LTSS are not currently being met, it would be disingenuous for the AWA to make recommendations designed solely to achieve a specific cost reduction level, when it is our position that some level of increased funding will be required to address the needs of those on the waiting list for Waiver services. While the AWA does not believe that sufficient data exists that would enable us, or anyone else, to accurately calculate the fiscal impact of any of the proposals submitted by us, or by others, we do believe that there are strategies that can lead to greater levels of effectiveness and efficiency within the State’s Long Term Care Program in general, and the ACS Waiver in particular. To this end, we submit the following comments, analysis and recommendations.


Strategic Planning

Strategic planning is a process. For a strategic plan to achieve a desired income, the process requires the establishment or development of goals, objectives and strategies. We have adopted the following as the basis for our presentation:



The first part of strategic planning is to set a goal. We recommend the following:

“Arkansas will provide long term services and supports in an effective and efficient manner to its citizens with intellectual and developmental disabilities such that each individual will be able to achieve their full potential and enjoy the quality of life they desire” 



The second step is to develop a set of objectives designed to achieve the goal. An appropriate objective that is designed to achieve the goal is:

To provide the right services and supports, to the right people, at the right time, in the right amount, in the right place, and at the least cost possible.



Strategies are the specific steps to be taken to implementing the objectives. 



Strategic Recommendation

  1. Organizational Changes

The programs that address the LTSS needs of the various populations in the State are administered by a multitude of Divisions with the Department of Human Services (“DHS”). Without a coordinated, comprehensive or cohesive approach that encompasses the entire range of LTSS provided, there is a negative impact on the effectiveness and efficiency of each of the individual programs. We recommend:

    1. Reorganize DHS to create a Division that focuses exclusively on institutions, and a Division that focuses on Home and Community Based programs.
    2. The Division of Institutions would administer all programs related to nursing homes, Human Development Centers (“HDC”), Intermediate Care Facilities for Individuals with an ID/DD (“ICF/IDDD”), and the Arkansas Health Center. The goal of this Division should be the eventual privatization of each institution. For new admissions, HDCs should be considered an acute care resource rather than a continued care resource, and admission should only be for those who have accessed community care, with support, and been unsuccessful.
    3. The Division of Community Based Care would administer all aging, behavioral health and ID/DD programs that provide LTSS in a home and community based setting. 
    4. The Div. of Community Based Care would be charged with developing coordination between programs to prevent unnecessary overlap or duplication of services. Currently, in a family home with an ID/DD individual, an aging parent and a grandchild with behavioral issues, services to the family would be provided by three different DHS Divisions, with three case managers, three service plans, three case workers, etc. The attendant care staff for the person being served by the Waiver who might be taking the ID/DD individual to the grocery store is not allowed to take the grandmother. Staff taking the grandmother to a doctor’s appointment may not drop the grandchild off at school. Policies and procedures are needed whereby a family can share a worker, the duties and the cost of providing care when appropriate.
    5. Move the administration of the TEFRA Waiver program from the Office of Long Term Care to the Division of Developmental Disabilities (“DDS”). Eligibility for the TEFRA Waiver and the ACS Waiver is based on a determination that the person has a statutorily defined developmental disability and requires an institutional level of care. While the criteria are identical, each Waiver program utilizes a different set of staff and psychologists to make the eligibility determinations. If a participant in the TEFRA Waiver moves to the ACS Waiver, the entire eligibility determination process is repeated. There are economies of scale and greater efficiencies available when administrative functions common to more than one program are performed by a single entity.


  1. System Changes

Achieving the objective of providing the right services and supports, to the right people, at the right time, in the right amount, in the right place, and at the least cost possible requires that all ID/DD related programs be subject to comprehensive and uniform policies and procedures. We recommend:

    1. Independent Assessment. A functional needs assessment is the key to controlling utilization. It is this process that determines the specific need for services and supports for each individual. It ensures that the right services and supports are authorized in a consistent and nondiscriminatory manner. For the assessment process to be effective, it must:


      1. Be administered to all individuals with an intellectual or developmental disability that are applying for, or receiving, Medicaid funded, Licensed/Certified DDS support services. This includes participants in any ID/DD related Waiver program, residents in any HDC or ICF/IDDD and individuals receiving services in a Developmental Day Treatment Clinic Services facility.
      2. Utilize an assessment tool that is easy to administer and is designed to reliably and accurately identify an individual’s functional needs. 
      3. Have been thoroughly tested to ensure that the results are statistically valid
      4. Permit a case manager and the client to develop a service plan that addresses all of the necessary services and supports identified in the assessment. 



    1. Individualized Budgets. Develop a methodology by which the assessment results can be used to create an individualized budget for each client. The methodology must ensure that:


      1. The individualized budget, or budget tier, assigned to the client is based on the specific services and supports identified by the assessment as being necessary.
      2. The projected cost of any service or support to be covered by the budget is based on the cost of providing the service or support in a home and community based setting. 
      3. The individualized budgets, or budget tiers, assigned to similarly situated clients are statistically valid and nondiscriminatory.  


    1. Level of Care Determination. Eligibility for the Waiver requires a determination that the individual is in need of an institutional level of care. For all programs that require this determination, it should be made by a single entity, preferably an independent entity. The level of care determination should:


      1. Contrary to recommendations made in other proposals, not be based on factors that consider the individual’s preference of setting, or the intensiveness of services and supports that may be needed.
      2. In accordance with regulatory requirements, be based solely on criteria that are no more restrictive than that applicable to admission to an HDC. 


    1. Case Management. Per recent CMS rules, waiver programs must ensure Conflict Free Case Management. This requirement prohibits case management from being provided by an entity that is furnishing direct services to the same client. Given inadequate reimbursement rates, direct service providers are not likely to be able to continue to furnish this service. Case management should be transferred to the State or a third party.


    1. Administration. Each of the administrative policies and functions addressed in 2.A through 2.D should be made applicable to all individuals with ID/DD receiving LTSS. Each function or activity requires a significant level of staffing and technological capabilities. To achieve a greater level of effectiveness and efficiency, we recommend that all of the administrative functions listed above be performed by a single entity, such as an Administrative Services Organization (“ASO”). An ASO should be established to perform the level of care determination, administer the assessments, develop budgets based on the assessments, have case managers that coordinate with the client and direct service providers in developing an individualized service plan, and arrange for services and supports to be furnished by the direct service provider chosen by the client. By bundling the various functions under one contract for services, and taking advantages of the economies of scale that would be present, the total cost of furnishing the administrative functions would likely be less than the cost of doing so on a separate basis.


    1. Self Direction. The AWA strongly recommends that the ACS Waiver include an opportunity for individuals to exercise a greater degree of self direction over the development and implementation of their individualized plan of care. In self directed plans, the client has greater autonomy in deciding what services and supports are most important to them. In many case, the client would be willing to accept a reduced budget allotment in exchange for not being subjected to all of the bureaucratic burdens associated with receiving services through the traditional Waiver approaches. In a self directed plan, the client chooses the staff that will be providing services and supports. The staff is hired by the client, and is essentially paid by the client from their budget. Since in almost all cases, the staff hired by the client will not be receiving the same level of benefits that an agency based employee will often, or in many cases must, receive, the reimbursement rate that the Waiver pays for attendant care can be significantly reduced. For this population there would need to be an enhanced case management and support function to assure health and safety, but it would still be potentially more cost effective in many situations. 


    1. Remove Arbitrary Service Levels in the ACS Waiver. Service plans in the Waiver are categorized into three levels; pervasive, extensive or limited. Each level has a cap on the total cost of the individual plan. An unintended consequence is that a person that is determined to need a pervasive level of care may be required to utilize certain services, e.g., 24/7 attendant care, that they may not actually need. Individualized budgets will make this recommendation unnecessary.


    1. Emphasis on Work and Supported Employment. There is substantial evidence demonstrating that individuals with ID/DD who are able to obtain meaningful employment positions paying competitive wages not only report enjoying an increased quality of life, but that their need for ongoing services and supports decline over time. Whether through a more robust component of the ACS Waiver dealing with Supported Employment services and supports, or through other collaborative programs with different Agencies, a greater emphasis needs to be placed on integrating individuals with ID/DD into the work place. Arkansas should adopt the work first philosophy before placing individuals in more limited settings, and should begin work-based training as a mandatory part of the school curriculum. Work needs to be one of the cornerstones to system change and development. It is currently incentivized to keep people in segregated settings, while job coaching is underfunded and job development in nonexistent. Internships to develop work skills between high school and work are not present; yet for many in this population the extra step is required, not elective.


    1. Rebalancing. Arkansas spends proportionally more of its long term care dollars in institutional settings versus community based settings than almost all other states. It is a demonstrated fact that the average cost of institutional care is significantly more expensive than community based care. We recommend: 


      1. Future admissions to an HDC should be more tightly controlled. 
      2. No individual would be eligible for admission to an HDC on an expected long term basis until DDS certifies that (a) Waiver services have been furnished to the client, (b) no provider is capable of meeting the health and safety needs of the client, or (c) that there is no Waiver provider willing or able to provide Waiver services to the client (d) short-term evaluation, programming, and medication balancing in an HDC has not proven effective to increase community success, and should be stopped. 


  1. Eliminate the Waiver Waiting List. There are currently close to 3,000 individuals who have been determined to be eligible for the Waiver, but remain on a Waiting List to actually begin receiving services. Some have been on the Waiting List for as long as eight years. Pursuant to the Supreme Court’s interpretation of the integration mandate contained in the Americans with Disabilities Act (“ADA”), which requires that services provided to individuals with ID/DD be furnished in the most integrated setting, the Court indicated that a state could establish compliance with the ADA if it demonstrates that it has, “A comprehensive, effectively working plan for placing qualified persons with disabilities in less restrictive settings, and a waiting list that moves at a reasonable pace not controlled by the State's endeavors to keep its institutions fully populated”. To address the Waiver Waiting List, we recommend that the State do one, or more, of the following;


    1. Adopt a comprehensive, effectively working plan for placing qualified persons with disabilities in less restrictive settings.
    2. Direct any monies from savings realized through reforms to the DD Program to the elimination of the Waiting List.
    3. Increase the cap on the number of people that can be served by the Waiver.
    4. Amend the Medicaid State Plan to include the Community First Choice Option (“CFCO”). The CFCO provides for an enhanced federal match rate for services and supports furnished in a home and community based setting. These services and supports can reduce, or delay, the need for institutional placement, which furthers the objectives of Rebalancing described above.


Cost Implications


The use of an assessment ensures that each individual is receiving the right services and supports, in the right amount and at the right time. This controls against overutilization of waiver services by an individual. It also addresses underutilization. There is no reliable data available from which it can be determined whether or not the assessment process will result in more or less needed services and supports being identified. If overutilization is a problem, then costs will decline. If underutilization is widespread, then costs will rise. 

The use of an individualized budget ensures that services and supports are being furnished in the right place and for the least cost possible. Each similarly situated individual will have the same amount of money to spend on services and supports. The budget will not be impacted by a person’s choice of settings. A person may choose to receive their services in an institution or in a HCBS setting, but their budget will be fixed. It is expected that total costs will decline when payments are tied to specific services and supports, and are based on them being furnished by the low cost provider. There is little, if any data, available to quantify a dollar amount of such savings.

The cost implications of using an ASO to handle many of the administrative functions related to the DD program are also hard to quantify. There are economies of scale in performing assessments, setting of budgets and making level of care determinations for the entire DD population that should result in a more efficient use of resources. On the other hand, case management is likely to cost more than before. Almost all current providers of case management report that they are losing money on the service. Even with the economies of scale available, it is doubtful that any entity will be able to furnish case management without an increase in the reimbursement rate.

The only thing that can be said with any degree of certainty is that the adoption of the strategies discussed above will help achieve the objectives of providing the right services and supports, to the right people, at the right time, in the right amount, in the right place, and at the least cost possible. In doing so, the DD program will be as effective and efficient as possible. What cannot be said with any degree of certainty is exactly what the aggregate cost implications will be, other than to say that total costs are as low as possible. The use of universal assessments may, or may not, result in decreased utilization. The use of individualized budgets may reduce costs by utilizing pricing based on the least cost provider. The use of an ASO will ensure that economies of scale are realized, but there is no assurance that the ASO will be able to perform their functions more cheaply.

Projecting a specific dollar amount of savings that might be realized by implementing the above strategies is impossible. There simply is not enough reliable data from which to make calculations. We could make a totally unsupported assumption that the strategies would result in less utilization of Supported Living or Respite services by a certain percentage amount to arrive at a derived projection. However, this “derived” projection would be nothing more than an arbitrarily plugged number. Future utilization is unknowable at this time. Whether or not an ASO will be able to reduce administrative costs in the future is also unknowable. 

What we do know is that rebalancing is a critical component in any plan to reduce DD program costs. Rebalancing does not necessarily require that any, or all, of the HDCs be closed, although doing so would produce substantial savings. What rebalancing does is ensure that the reimbursement rate, based on the low cost provider, for any given service or support is uniformly applied to all recipients. This means that a person in an HDC does not receive any more money from the State than what it would cost to furnish the same necessary services through the Waiver. 

We believe that the use of less restrictive supports would result in cost savings. It is “preventive” care in our system. Providing supports earlier, and preserving family unity, is more effective than waiting until there is a crisis that disrupts the family bond and the community support for the individual. It is similar to going to the cardiologist and being able to use diet and out-patient procedures before resorting to bypass surgery. More restrictive measures should only be used if all other attempts have failed. In our current system, you can get bypass surgery, but nothing beforehand. 


AWA Response to Waiting List Letter Issue

On or around January 14, 2016, The Division of Developmental Disabilities Services (“DDS”) sent a letter to all individuals that are on the waiting list for the ACS Home and Community Based Waiver (“the ACS Waiver”). The letter stated that, “We are conducting follow up to determine if you are still interested in the ACS Waiver and wish for your application to remain current”. The letter further stated that, “If we do not have a response by [ten days following the date of the letter], we will consider that you are no longer wanting or needing services through this program and your application will be subject to closure”.

After having had an opportunity to review the letter, members of the AWA Board immediately contacted Melissa Stone, Director of DDS, with our concerns about the statement indicating that a failure to respond to the letter within the allowed time period might result in an individual being removed from the waiting list. Were this to happen, individuals could reapply for the ACS Waiver but, if again determined to be qualified and eligible for the ACS Waiver, they would be placed at the end of the current waiting list. 

Ms. Stone quickly responded that removing people from the waiting list was not DDS’s intent. She will be sending a new letter out to everyone that was sent the original letter. The new letter makes it clear that DDS is simply trying to ensure that they have accurate and current information on those individuals on the waiting list. If DDS does not receive a response to the letter, they will make additional efforts to locate the individual. The new letter further explains that if an individual does not respond, and DDS is not otherwise able to locate them, the individual will be moved to a deferred list.

A person that is placed on the deferred list WILL NOT lose their place on the waiting list. If DDS is subsequently able to locate the person, or the person contacts DDS with current contact information, they will be placed back on the active waiting list in the same order they were previously. The only way an individual will be permanently removed from the waiting list is if they request to be removed. In order to ensure that individuals at the top of the waiting list are enrolled in the ACS Waiver as soon as an open slot becomes available, DDS must be able to contact the individual. As such, we strongly encourage everyone to promptly complete and return the form, or otherwise contact DDS. 

We would like to commend Ms. Stone for her quick response to our concerns, and for committing to sending out a new letter that is significantly clearer and more informative.

Arkansas Waiver Association Comment on Potential Cuts to DD Services

The Arkansas Waiver Association is deeply concerned about the Governor and the Healthcare Reform Task Force’s plan to cut $232 million from Developmental Disability Services while also exempting the Human Development Centers (HDCs) from finding cost savings.

The $232 million is expected to be spread out over 5 years ($46.4 million a year). The average cost for adult institutional care is $135,000 per person per year, compared with $69,000 in the Alternative Choices Waiver program. Pediatric institutional care averages $162,809, compared to $45,937 for community-based care under a waiver program.  If the HDCs’ costs were looked at seriously by the state government as an opportunity to find savings, this would still not find a solution for the 3,000 people on the waiting list. As it stands now the cost cutting measures are expected to come from only those in the community and continue to keep those waiting on the list.

If the Governor and legislature are planning on these $232 million in savings to come from the DD providers through a reduced reimbursement rate this will only constitute a reduction of services for families in the community. The net result of this could lead to even more families institutionalizing their loved ones and adding more costs to the taxpayers.


Arkansas Waiver Association: Recommendations to John Stephen (The Stephen Group, Inc.) – Medicaid and HCBS Reform for Individuals with Intellectual and Developmental Disabilities in Arkansas.

On November 18, 2015 representatives with the AWA (Arkansas Waiver Association) met with John Stephen, managing partner with TSG (The Stephen Group, Inc.) to share AWA’s recommendations regarding Medicaid and HCBS (home and community-based services) reform for individuals with intellectual and developmental disabilities in Arkansas. According to the most recent TSG report, the average amount of adult participants in the following programs per month in 2014 were: DDTCS (Developmental Day Treatment Clinic Services)-10,122, ACS Waiver (Alternative Community Services)-3,886, ICF (Human Development Centers and Private Intermediate Care Facilities)-1,238. While there are a myriad of concerning issues impacting Arkansas Medicaid beneficiaries, the AWA attempted to cogently present to Mr. Stephen the most pertinent issues impacting the delivery of supports to Arkansans with disabilities at a systemic level.


·         Ensure Assessments and Plans of Care are Based Upon Objective Criteria that Truly Meet Individualized Needs

o   If Arkansas Medicaid is going to shift to a system that is driven by a standardized assessment that determines each individual’s needed level of services and supports, and the amount of money to be allocated to provide those services and supports, then the state must ensure that the validity and confidence level of the assessment tool and budgeting algorithm used are statistically significant.

o   Plans of Care that are generated from the standardized assessment must be based on objective criteria and true individualized needs.

·         Reimburse Community Providers Based Upon Actual Cost or Adjust Rates to Reflect True Operational Needs

o   ICFs in Arkansas are currently reimbursed based upon the actual costs to operate. Community providers however are reimbursed based upon rates that are pre-set and non-negotiable. As operating costs continue to rise through inflation and unfunded mandates, community-providers are struggling to generate enough revenue to meet operational and programmatic demands.

·         Rebalance the Long-Term Services and Supports Model and Permanently Dissolve the ACS Waiver Waiting List

o   According to a report prepared by TSG and provided to the Arkansas Health Reform Legislative Task Force, the average cost to provide care to a person in the community within the ACS Waiver program is $69,000 per year as opposed to $135,000 per year in an ICF. Many studies have also demonstrated that quality of care increases and maltreatment decreases when persons are supported in the community.

o   While numerous recommendations were made in the TSG report regarding methods to fund the waiting list, the AWA recommends the following:

§  Option 1: Immediately cease all new admissions to ICFs and redirect all new beneficiaries requiring long-term supports to the community.

§  Option 2: Only fund ICF plans of care based upon the level of services and supports generated from the standardized assessment. If the ICF cost to care for the individual exceeds the level of care amount, the ICF either assumes the additional cost or shifts the cost to the individual to pay out of pocket.

o   The State of Arkansas should immediately create a review group for the transition of all individuals in state custody who currently reside in an ICF.  For individuals in State custody, the State must utilize less restrictive and less costly alternatives as the first option. If the individual’s less restrictive placement proves unsuccessful after having utilized all community services, then a more restrictive placement may be allowed.

·         Shift to a Value-Based Purchasing Model that Incentivizes and Requires Quality Outcomes

o   Quality outcomes must be defined and adhered to that are based on both health and quality of life metrics. Quality of life metrics must include multiple domains such as socialization, employment and meaningful life. The AWA recommends the Personal Outcome Measures utilized by the Council on Quality and Leadership.

·         The State Must Encourage and Not Unnecessarily Interfere with Provider Competition

o   The state must lift the unnecessary ban within Act 645 that inhibits new providers from serving DDTCS beneficiaries in a county that is not considered underserved. More competition, not less has demonstrated higher value (outcomes to cost) in most industries including health care.

o   As the system progresses, the state must work to ensure the system does not evolve into one that consists of only a few providers, but one that has many. More providers, not less will offer a greater number of consumer options and create a market-driven environment that will naturally yield value.

·         Remove the Annual Prescription for Services Requirement

o   Individuals currently receiving ACS Waiver services are required to obtain a new prescription for services annually in order to maintain eligibility. Except for a few exceptions, Arkansas Medicaid contains an annual payment cap limiting an individual’s ability to receive physician services. In an effort to save costs, the AWA recommends the removal of the annual prescription requirement except during instances in which there is a change in the individual’s condition or plan of care.      

·         Fund and Support Internships and Job Development

o   Many employers have identified their desire to employ individuals with disabilities but cannot devote the time and resources necessary to train them to be successful. Unlike many applicants without disabilities, people with disabilities often lack the basic skills necessary to be a successful applicant such as problem solving, social interaction and workplace conduct. Internship programs that pay individuals minimum wage or higher while teaching these skills would fill this void and result in more people gaining and maintaining employment in an integrated and competitive setting.

o   Many individuals with disabilities may oftentimes be more successful working in a particular job that has been customized or modified for their abilities. Furthermore, many employers are unaware of the benefits that people with disabilities often bring to the general workforce such as higher retention. Funding job development would fill this gap as more employers would be educated on and assisted with employing individuals with disabilities.

With the Arkansas Medicaid system in flux and the concern for cost containment greater than ever, many of Arkansas’s most vulnerable citizens continue to be an afterthought in the midst of a system redesign that will impact every facet of their lives. Through careful and deliberate implementation of the suggestions made above, the Arkansas Legislature and Governor will be better equipped to create a system that rewards quality, encourages competition and meets the needs of all Medicaid beneficiaries. The AWA is grateful to John Stephen for listening and taking into consideration its concerns and suggestions regarding Arkansas Medicaid reform and looks forward to working closely with all stakeholders to develop a system that truly embodies quality and value.






Keith Vire, President

Arkansas Waiver Association

Letter to Health Reform Legislative Task Force

December 14, 2015

The Honorable Cecile Bledsoe and Charlie Collins
Co-Chairs, Health Reform Legislative Task Force

Dear Senator Bledsoe and Representative Collins:

We are a group of Arkansans comprised of individuals who have disabilities and their families, community members, and health and social services professionals who have been meeting together regularly for over three years now.

We are writing to express our concern about the massive waiting list for community services and supports for Arkansas citizens with developmental disabilities and to ask that, as your task force develops a plan for our State to move forward with healthcare reform, these vulnerable individuals — almost 3000 in number — are not forgotten.

During the last legislative session, we worked hard to promote the Community First Choice Option (CFCO), and we were repeatedly assured by legislators that, “while we don’t think CFCO is the right option, we’re committed to finding a way to do away with the waiting list.”

Since that time, although members of the task force continue to express a willingness to end the DD waiting list, we have yet to hear any concrete proposal to address the 8–10 year-long wait for home and community-based services. We all understand that the task force is dealing with a multitude of issues; the waiting list is only one of many, but this is vitally important to those families who have been waiting and waiting for years.

We’re contacting you today to ask for more information. Does the task force intend to make specific recommendations to the legislature to address the waiting list and, if so, what are those recommendations? Will potential savings realized under Medicaid reform be used to fund home and community-based services for people on the waiting list? Will funding those services be a priority in upcoming budget negotiations? What is the timeline for funding home and community-based services for people on the waiting list?

We believe that we, as a group, could assist the task force to build statewide support for whatever plans you propose to serve people with disabilities living in the community.

We sincerely appreciate the work that you are doing, and we respectfully ask that you share information related to potential waiting list plans with us.

Thank you for your efforts on behalf of Arkansans with disabilities.



Arkansas Autism Resource & Outreach Center (AAROC) - Dianna Varady, director.
Arkansas Disability Policy Consortium - Judy Brooks, chair.
Arkansas State Independent Living Council - Sha Stephens, executive director.
Arkansas Support Network - Keith Vire, president.
Arkansas Waiver Association - Justin Nickels, association manager.
Jane and John Browning - Parents of child on waiting list for 4.5 years.
Disability Resource and Advocacy Center - Brenda Stinebuck, executive director.
Disability Rights Arkansas, Inc. (DRA) - Tom Masseau, executive director.
Independent Case Management - Cindy Alberding, president.
Integrity, Inc. - Vicki Grantham, director.
Michael Thornton - Self Advocate
Parent Advisory Council, Inc. - Angela Roberson, president.
Partners for Inclusive Communities - David Deere, director.
Spa Area Independent Living Services - Brenda Stinebuck, executive director.
United Cerebral Palsy of Arkansas - Larry Stang, president and CEO.

AWA Position on CFCO

Statement of Support, Community First Choice Option:

The Arkansas Waiver Association fully supports implementation of the Community First Choice Option (CFC) in Arkansas. We cite these salient points as justification for our unqualified support:

  • CFC is simply a funding option. While CFC does have programmatic requirements, they are similar to existing Waiver requirements, and no major programmatic changes to our state’s supports will be required.
  • Changes to our systems of supports and services will come. Many of the changes will result from our state's Payment Improvement Initiative, which our Legislature previously approved. These changes were initiated BEFORE CFC was envisioned, and are going to happen with or without CFC. Some in our state are confused about these two concepts and have connected CFC with changes that have nothing to do with CFC. Do not be swayed by these arguments.
  • CFC does not dictate the closure of Human Development Centers (HDC's) or nursing homes. It simply encourages states to invest in community placements and settings. The HDC's and nursing homes will continue to be available in our state after the implementation of the CFC. If the increased availability of community options reduces the need for HDC or nursing home placements over time, then that will be the result of market forces and individual choice, not a state mandate.
  • CFC encourages states to invest in community placements and settings by increasing the federal government's Medicaid matching fund rate by six percentage points.
  • Supports currently provided by the state under a Medicaid Waiver will become part of our state plan services, and will be available to all who qualify, not just to those who are fortunate enough to have lived through the long waiting period (currently estimated at 8 years).
  • Some fear that even with the six percentage point increase in the federal matching rate the long-term costs of CFC will strain the state’s budget to the breaking point. Officials from Developmental Disabilities Services and the Division of Medical Services (Medicaid) have used very conservative assumptions to project the costs twelve years into the future, and these projections show a net gain for our state’s budget.
  • Because of the increased level of federal Medicaid matching funds, we will be able to support the almost 3000 people who are eligible for services and are currently on the Medicaid Waiver waiting list with the current level of state funding. There will no longer be a waiting list.

DDS Provides Clarification on CFCO & TEFRA

AWA Members: We recently got a question from one of our members--it's pretty technical and there are some twists and turns, but it's really important stuff, so we wanted to provide the question and the answer that came from DDS:

"It still seems that those on TEFRA will not be an eligible group under CFCO. Additionally, some of the children on TEFRA have physical disabilities. They will not be able to transition to the ACS Waiver if we keep the Waiver. So, it would be a program that is open to all I/DD, seniors, and adults with physical disabilities, but not available to children with physical disabilities.

The second issue is that the TEFRA Waiver says that the participants are eligible to receive all state plan services. Does that mean that, because CFCO is part of the state plan, they should get the services as a part of TEFRA?

Also, is it not true that TEFRA's latest renewal was through December 31, 2014? If that's the case, won't it pose a problem for DHS/DDS? With CFCO scheduled to start January 1, 2015, there is no "transition" period.

Is the plight of the physically disabled children on the TEFRA Waiver an issue for the AWA? Given the expiration date for the TEFRA Waiver, I think DDS needs to come up with a transition plan for them. They can either transition them to the ACS as soon as the ACS renewal and the CFCO are approved, or they can push for a readoption of the TEFRA eligibility option. What I don't think is an option is to wait until December 31st, and then discover that a big problem exists. Unless someone like the AWA asks questions, I am afraid that our state will simply avoid the issue until it is too late. I will leave it up to you management types to decide how to handle this matter."

"Individuals eligible through any 1115 Waiver are not eligible for CFCO services, that is a federal CMS requirement. Therefore there won’t be a transition from TEFRA to CFCO. We expect that individuals with developmental disabilities will move from TEFRA to DD HCBS Waiver to access CFCO services and avoid premium payments. Since under proposed plan DD HCBS waiver will no longer have a restrictive cap, there won’t be a waiting list, once everyone on the existing waiting list is enrolled.

Current TEFRA is good until the end of December 2014. 1115 TEFRA Waiver renewal was submitted today to extend it to December 2017.

Outside of TEFRA, a child with no DD diagnosis, regardless of functional deficits, would not be eligible under current law and policy. The "other" category might fit but only if the condition caused the child the function as if they has ID. Imagine a child with a heart condition or cancer. No ID but lots of deficits. Children with physical disabilities (eligible for Medicaid under any category, including TEFRA) will continue to be eligible for Personal Care State Plan services, but this service is pretty restricted for children. Title V, I believe may provide some support, including respite.

This is an important question to raise with the Department and other policy makers."