Developmental Disabilities Wait List Strategic Plan ......Research, Evaluation and Systems ......

2012

Gary Walby, Ph.D. Senior Evaluator

Samantha Marcus, M.S.W.

Research Assistant Research, Evaluation and Systems

August 31, 2012

Developmental Disabilities Wait List Strategic Plan: Preliminary Other State Document Report

Contract # 837CL11

“Sponsored by the United States Department of Health and Human Services, Administration on Intellectual and Developmental Disabilities, and the Florida

Developmental Disabilities Council, Inc.”

Contents Introduction .................................................................................................................................... 1

Project Objectives ....................................................................................................................... 2

Preliminary Findings ........................................................................................................................ 2

1. Barriers to Service Delivery and/or Supports ........................................................................ 3

2. Community Support ............................................................................................................... 5

3. Developmental Disorder Specific Information ...................................................................... 6

4. Formal or Informal Services or Network Related .................................................................. 6

5. Medicaid Related ................................................................................................................... 7

6. Regulation, Implementation or Changes to Federal or State Law ......................................... 9

7. Wait List Related .................................................................................................................. 10

8. Waiver Specific Information ................................................................................................ 11

Sample of Other State Strategies or Efforts to Address their Wait Lists ...................................... 12

Policy and Implementation Ideas ............................................................................................. 12

Community‐Based Ideas ........................................................................................................... 13

Service Delivery for Wait Listed Ideas ...................................................................................... 14

Capacity, Inclusion and Independence Ideas ............................................................................ 15

Analysis Plan and Objectives ......................................................................................................... 15

Other State Analysis Objectives ................................................................................................ 15

Analysis Plan ............................................................................................................................. 16

Ounce of Prevention Fund of Florida 1

Developmental Disabilities Wait List Strategic Plan:

Preliminary Other State Document Report

Introduction

This report summarizes preliminary findings from the qualitative analysis of information from multiple states as part of a comprehensive research and analytic design to develop strategies to reduce the time and number of persons with a developmental disability on the Home and Community Based Services Wait List (hereafter referred to as the Wait List) awaiting Waiver services in Florida. Documents were obtained from 18 state governments as well as from universities, foundations and other state and national sources. Documents were also collected that summarize, discuss or compare information from two or more states. A final group of documents were selected from the peer reviewed literature and are currently being reviewed in a separate step of the research process. Document information is summarized in Table 1. The number and percent given for the contribution from different sources without including peer reviewed documents represent the documents summarized in this preliminary report. The peer reviewed sources are being analyzed as part of the second phase of the document analysis and the change in proportional contribution to that analysis is portrayed in the “% with peer reviewed documents” columns.

Table 1. Summary of Documents by State, Multi‐State and Peer Reviewed

State n

% without Peer

Reviewed Documents

% with Peer Reviewed Documents

State n

% without Peer

Reviewed Documents

% with Peer Reviewed Documents

Alabama 19 4.6 3.9 New York 12 2.9 2.4

California 36 8.8 7.3 North Carolina

12 2.9 2.4

Colorado 30 7.3 6.1 Ohio 11 2.7 2.2

Georgia 26 6.3 5.3 Pennsylvania 10 2.4 2.0

Illinois 22 5.4 4.5 South Carolina

17 4.1 3.5

Kentucky 12 2.9 2.4 Tennessee 13 3.2 2.6

Michigan 20 4.9 4.1 Texas 12 2.9 2.4

Mississippi 17 4.1 3.5 Washington 35 8.5 7.1

Nevada 24 5.8 4.9 Multi‐State 63 15.3 12.8

New Jersey 20 4.9 4.1 Peer Reviewed

80 16.3

n without peer reviewed documents = 411 n with peer reviewed documents = 491


Florida is not the only state facing a growing crisis of limited resources for vulnerable persons with a developmental disability. The states in Table 1 were selected purposefully because they were (1) in close proximity to Florida and share many of the same economic and political influences, (2) are of similar size to Florida and have many of the same strengths and challenges in diversity, (3) were highlighted in the literature as innovative and visionary with attempts to address issues with vulnerable populations, or (4) were recommended by at least three people as targeting similar problems in their state. Detecting possible strategies in a wide array of documents for review by the Task Force is a complicated process. Some documents offer more promise as they are named as strategic planning documents or some variant. Lessons learned from previous strategic planning projects recommend casting a wide net as possible strategies can be embedded in unlikely sources. Possible strategies will also be sought in the states listed in Table 1 through interview and survey processes. Potential Florida strategies will be accessed via document analysis, interviews, focus groups, serial focus groups with select group, and surveys. These methods will be fully elaborated to the Task Force over the next 12‐month strategic plan development process and suggestions solicited from the Task Force and others to improve and better target the research and development process.

Project Objectives

The following project level objectives are stated next:

1. To finalize a stakeholder and empirically supported strategic plan for individuals on the Wait List for services for a developmental disability

2. To develop a tiered system of strategies arranged by degree of anticipated positive impact on the Wait List and Waiver system

3. For each final strategy selected, to develop action steps to assist with implementation of the plan that are evaluated as being effective, feasible and affordable

Strategies selected for the final strategic plan may include suggested changes in policy, legislation, service systems or service provision, development of alternative and innovative support services, and others. Starting this process without any preconceived notions other than what would violate standing Federal or State law is of paramount importance. The focus on other states prior to Florida is not accidental in order to avoid purposely or accidentally discarding a possible strategy because it would not fit Florida’s system as it stands. Curtailing potential innovation before it can be explored must be avoided at all times.

Preliminary Findings

Preliminary findings are provided for eight categories of information. This summary will focus on an array of points for each section to provide the reader with a broad sample of what the analytic process is finding. The section summaries focus on information relevant to the state systems and are used to


help understand the different state contexts in order to gauge whether potential strategies would be useful for Florida. The final out of state document analysis to be completed by November, 2012, will have more detail and cross‐coding analysis (see Analysis Plan and Objectives section below). Information is cited to specific states when this appears to be relatively unique to one or a few states. Otherwise, the information presented here was sufficiently ubiquitous that linking to specific states is not needed. The following section focuses exclusively on some preliminary strategies that can be considered by the Task Force and are listed alphabetically to avoid unintended emphasis on any one section.

1. Barriers to Service Delivery and/or Supports

Starting at a broad level, many states were defined as having a lack of consistency within and across agencies that confuse individuals and families who are trying to access information and services. These inconsistencies can also mask gaps in services as well as make it difficult to address problems within the system. Lack of cohesion between agencies’ policies creates confusion for providers and the individuals and families trying to access services. These differences in policies make it difficult for eligibility and referral staff to give accurate information to those seeking information and services. Lack of accuracy was cited in several documents as a reason why individuals do not sign on to the state wait list earlier and indeed for some that thought they were on the wait list only to find out sometimes years later that they were not.

A common complaint in a large majority of states is that it is difficult to access/obtain services unless the individual/family is high‐risk or in crisis. In many states with wait lists for their waivers, most open waiver slots are given to those who are high‐risk or facing a crisis of becoming institutionalized or hospitalized. This triage method makes it extremely difficult to receive services if the needs of the individual are not extreme. This often means that people go without services until their condition worsens to the point where it is necessary to receive more intensive services. States were unanimous that this resulted in lowered effectiveness of services and was highly cost inefficient.

Many individuals and families find navigating the different systems that provide services difficult and frustrating. In many states, different waivers are administered through different state agencies with the state Medicaid plan being administered by still a different agency. These agencies may then contract out eligibility determination and services to community‐based agencies and organizations, adding an additional layer of cost and often additional procedures to navigate. This fragmentation results in confusion and frustration among individuals and families trying to access services, adding stress to the often already stressed family system. This was especially noted by Colorado and Nevada.

The stress on families to navigate the complexity of multiple agencies in charge of different services for different populations often results in families feeling forced to ‘take what they can get’ when this may not be what they want or need. Families noted that they often felt compelled to be as gracious and thankful as possible even while they struggled to meet gaps that services did not come close to meeting or be labeled as ungrateful and troublesome; risking the loss of the services they were receiving.


The fragmentation of service agencies hinders the individual or families ability to understand the full spectrum of services available. A lack of focus on ameliorating the problems in the system and reducing the focus to individual services, or even to expecting the families to somehow change to fit the system, results in poor system management and the loss of family trust and involvement in the system when by chance something positive occurs that would help them.

Families often feel blame for not fitting into the system. This is especially true for low‐income families with a family member with high needs that have difficulty finding the time it takes to acquire services due to the need to work. This is especially true in fragmented systems where family members must go to multiple agencies for services. Depending on the family member’s job, they may not have paid leave that allows them to afford to take time away from work without compensation. Without waiver support and after the self‐advocate ages out of school services, many of these families recruit other family members to watch/support the person with a developmental disability or simply hope that nothing happens to them as they sit home while the parent/guardian works. Remaining on the topic of schools for a moment, in many schools, students with intellectual and developmental disabilities are segregated from the rest of the student body, with many not completing school with a standard high school diploma, a pre‐requisite for further education and employment. As noted, students often leave, graduate from or age out of the school system to only wait at home while waiting for services, if services are even available and they are on a wait list. Together, this reduces the possibility for independence and inclusion, limiting the capacity to be an employed contributor to the system.

Self‐advocates and family members that live in rural areas have fewer options when deciding on a service provider and limited options in alternatives while waiting for services. This puts even more stress on the individual, their family, and caregivers. Families in some states even feel they have longer “waits” for services than those in urban areas. This was noted for Colorado. A related problem is accessing affordable transportation for clients to reach services and supports and at times for providers to reach clients.

Individuals and families have difficulty in finding providers who meet their needs. Reasons cited are lack of training for providers and states setting rates for services that are not high enough to attract diverse providers who are adequately trained. As one state noted, “…what other population is forced to accept low quantity and low quality services and are expected to smile about it?” States with noted low reimbursement rates are Illinois and Michigan. The need for training professionals and family members as caregivers is a related barrier. Federal law allows non‐primary caregivers to be paid to provide certain services to a family member eligible for services. It is important that home health care professionals and family members who are paid caregivers receive adequate training for not only their tasks and duties but on how to interact with the individual they are serving. The lack of training for agency staff, caregivers, and providers limits those who can provide care in the most integrated setting for the client.

Specific examples of service policy barriers were noted, two of which include inconsistencies between nursing homes and home and community‐based service (HCBS) reimbursement. For example, in Colorado, nursing homes can be reimbursed for services up to 3 months prior to eligibility being


determined, while eligibility must be determined before HCBS can be reimbursed. This is an example of what is referred to as “institutional bias” and can influence people to choose nursing home care over HCBS. Access to dental care/dentists that take patients with a developmental disability is an issue in every state reviewed, including non‐acceptance of Medicaid. Low reimbursement rates and lack of specialty training and expertise in order to serve individuals with more severe developmental disabilities, e.g. calming techniques, were consistent barriers.

The final barriers summarized include lack of assistance for long‐term care planning and private insurance. Medicaid is the largest provider of long‐term care services, with few people adequately planning for their long‐term care. Few individuals have long‐term care insurance that would help pay for care in the event it is needed, if they can get an insurer to write the policy. Lack of employment training/opportunities that would foster inclusion and independence is very common. A large number of those with developmental disabilities wish to work. Job training and other programs that assist individuals obtain employment have been eliminated or reduced due to budget issues.

2. Community Support

Types of services covered under waivers vary by state but can include case management, homemaker services, personal care, adult day health, respite, companion, employment training, etc. Some states, e.g. Colorado and California, noted a lack of fundamental research proving that some available services are efficacious. As a waiver service, states can set limits on the scope of services allowed under a waiver in addition to the waiver designating services for certain populations and/or areas of the state. These limitations allow states to maintain balanced budgets but can leave large numbers of individuals either waiting for services or deemed ineligible for needed services.

Independent living and inclusion are challenged by the many individuals that find themselves forced to choose to reside in an institutional setting due to the lack of available services in their community that would allow them to remain at home or independent. Institutional settings are, paradoxically, often far more expensive than community services. The communities with available services sometimes do not have sufficient choice for individuals and families to find a provider that meets their needs.

States were consistently noted to need better oversight for HCBS. This can be difficult due to the varied agencies and individuals that provide services in the home and community. Unlike nursing homes and institutions, community service providers are not constrained by an institutional setting and are more difficult to track. Though more difficult, states consistently recognize that they need to guarantee agencies and providers are adhering to the standards set by each state in order to provide safe care for individuals.

Providing oversight is often more difficult when agency staff and providers need training in working with and performing outreach to those in rural communities. Many agencies are centered in more urban areas yet serve rural counties as well. The staff and service provider need to be aware of the different issues those who live in rural communities face including isolation, lack of recreation, poor socialization opportunities and fewer services. Rural areas emphasize the need for more caregiver supports than what are currently available. The need for caregiver supports such as respite and mental health services


will only increase as the population of caregivers age. Support for caregivers is of vital importance as they provide the majority of care to individuals, often family members, with developmental disabilities.

3. Developmental Disorder Specific Information

A complete response to this section will be forthcoming in the final report of state documents. A few brief points now include that states definitions vary for what is considered an intellectual disability which effects eligibility for services. Federal guidelines list services states can provide to persons with intellectual disabilities and related conditions under “Intermediate Care Facilities for the Mentally Retarded (ICF/MR)” policy language, but give states the freedom to determine ICF/MR eligibility. Since an individual must meet the standard of eligibility for ICF/MRs to be eligible for waivers, and thus eligible for the wait list, this definition is an important distinction. Many states base their definition of intellectual disability on the federal definition, which excludes only a diagnosed mental illness specifically for related conditions. However, states in general are using the latitude in defining intellectual disability as an opportunity to cut costs via caveats that influence eligibility. Too many times, this may include language that is stigmatizing, limiting and acts as a barrier to community inclusion. However, some states attempt to support inclusion directly. For example, California has a Code of Rights for Individuals with Developmental Disabilities that specifically state that these individuals are the same as all other Californians and have the same rights and privileges.

Specific information on the developmental disabilities eligible for placement on the Florida Wait List was heavily skewed toward information on Autism. Autism Spectrum disorders have captured the attention of many states, for example:

• Texas established the Texas Autism Research and Resource Center (TARRC) which provides information and resources on Autism Spectrum Disorders (ASD).

• Nevada has specific state programs for Autism. One program provided cash assistance to families to help pay for services and is funded through Temporary Aid to Needy Families (TANF) dollars.

• Many states include Autism in their intellectual disability/developmental disability waiver or have specific waivers to provide services for these individuals, while some states, i.e. North Carolina, are trying to get services for Autism covered under the state Medicaid plan.

• The increase in the number of children on the Autism Spectrum has captured the concern of all the states reviewed. For example, as of 2010, of the 125,000 individuals with developmental disabilities in New York, 21,000 have Autism or a disability within the continuum. Confounding the issue is the fact that many private insurance plans do not cover services for Autism.

4. Formal or Informal Services or Network Related

When individuals are assessed for services, the amount and sometimes the quality of informal services an individual receives are taken into consideration in most states. Informal supports include support received from family, friend, church, community organizations and any other person or group that provides some type of assistance or support. Those in rural areas rely more heavily on family and


informal supports due to a lack of available formal supports. Many of these families may not even be aware of the formal supports that are available or how to access them.

Many states have caregiver support groups and self advocacy groups. These are outlets for parents and other caregivers to learn from each other and combine resources to help each other when needed. These groups are also helpful to new parents who may not know where to begin when accessing services or learning about the disability their child has. In 2010, AARP valued unpaid care giving at $375 billion per year. It is important to understand the amount of services and support unpaid caregivers and informal supports systems provide to individuals with developmental disabilities and that the long‐term care system would not be able to function without this level of informal support.

A few states have support programs for informal caregivers including Pennsylvania, California, and New Jersey, but they vary based on the services offered, even in relatively small geographic areas, and are vulnerable to budget cuts. When states are attempting to form legislation and policy, they often engage families through councils, coalitions and task forces as a way to help legislatures and policy makers understand the families’ views and needs. However, caregivers quickly become discouraged when repetitive attempts are made at engaging the caregiver and family without a plan for sustainability or a real understanding of their needs. Various attempts have been made to address longevity and quality of care. For example, The ARC of New Jersey has an Education Advocacy program that has an education advocate attend individual education plan (IEP) school meetings with the parents to help them through the process of developing an IEP for their child. This program is provided to parents at no cost.

Some service delivery systems try to blend services through contracting their HCBS needs to local and regional non‐profits, a practice common in California and Colorado. However, services offered under a waiver cannot duplicate service under the state plan but can expand those services to populations not covered under state plans, sometimes in creative ways. For instance, Tennessee has a program that trains and supports microboards. A microboard is a small group of people who form a non‐profit organization around a single individual with a disability in order to provide the individual with supports and services.

State policy determines what health‐related tasks can be delegated from professional nurse care to caregivers and what training or certification a caregiver may need, and how it is to be documented. Some states allow only nurses to perform certain tasks while other states allow family members and caregivers to be trained to perform these tasks, lowering the overall cost but possibly raising the stress level and burden on the family.

5. Medicaid Related

States are required to provide a ‘minimum level of care’ for elderly, persons with a disability, low‐income children and adults. Services included under a ‘minimum level of care’ are doctor appointments, x‐rays, hospital visits, nursing home care, and vaccines for children.

Under the Patient Protection and Affordable Care Act (PPACA), the income level has been raised to 300% of the federal poverty level. With these new eligibility requirements, if states use this option for


persons residing in institutional settings, they can also extend the change in poverty level to waiver eligibility, possibly resulting in increased and not lowered wait list numbers. The PPACA also allows states to provide waiver services to children without taking their parent’s income into consideration as well as providing services to a married person without regard to the spouse’s income. If a person is eligible for services under the 300% rule, they are expected to pay a share of their medical expenses. The amount an individual pays varies by individual circumstances and state.

Federal requirements for ICF level of care is that the person needs either health‐related care or services that are more than just room and board or because of mental or physical conditions, or need supportive services available only through institutions. States can then set the criteria for services offered in institutions. If a state does not cover a particular type of service in an institution (ICF/MR or nursing home), that type of service cannot be covered in a waiver, though there appear to be exceptions in some documents that are still being reviewed for a complete understanding. Noted previously, in many states there is a perceived institutional bias when assessing income for nursing homes versus HCBS. A spouse’s income is not considered when assessing for nursing home eligibility but is considered in HCBS eligibility. States are not required to include a spouse’s income in HCBS eligibility, but choose to do so to reduce the cost to the state through lowering the amount of assistance based on perceived greater personal resources.

States can choose to either set a “hard cap” for waiver cost that set individual budgets at a certain amount or states can use a per recipient average which allows the state to approve service plans that are above institutional cost with the expectation that other services in the plan will be well below that of institution care to average the costs. Movement to a hard cap by states has resulted in a shift in policy towards consumer directed services which allow individual control in choosing services and providers. These programs vary by state with a consistent concern that self‐advocates and families may not have the experience and knowledge to make informed choices and thus may run out of support before years end.

Medicaid is always the payer of last resort, but to be last there needs to be other alternatives that can be accessed first, and for many areas in the selected states, geography, an incomplete or poorly implemented service system, and other factors have Medicaid as the only payer. Even if an individual is eligible and has a location that accepts Medicaid rates, the many individuals competing for the time of the provider limits access. Problems consistent across states include:

• Low reimbursement rates dissuading professionals from providing services to waiver clients,

• Few or non‐existent alternative insurance supports

• Confusion whether one is eligible for Medicaid and how to sign up

• Not understanding the differences between waiver support and general Medicaid. If a person is eligible for general Medicaid they can misinterpret this as being eligible for waiver services resulting in additional stress as parents/self‐advocates find they are not eligible for services they thought they would be.


• How to locate and access consistent providers that accept Medicaid (if any), and that have the requisite understanding regarding developmental disabilities.

There have been some alternatives started that have not been fully evaluated but are worth monitoring. For instance, Illinois has a program that allows workers with disabilities ages 16‐64 to buy into Medicaid health insurance if they do not receive insurance through their employer.

6. Regulation, Implementation or Changes to Federal or State Law

The number, impact, cause, and changes to service implementation of Federal policies due to case law, the impact of political ideologies and, occasionally, evidence has changed the landscape of policy related to wait lists and waivers. A more comprehensive review of laws, their restrictions, and other possible effects on states’ attempts to alter policy will be included in the final version of this report. Some highlights of policy/legislative history and changes include:

• The Medicaid waiver program was authorized in 1981 under section 1915(c) of the Social Security Act (SSA) as a way for states to provide home and community based services as an alternative to nursing home and ICF/MR care.

• Individuals with Disabilities Education Act (IDEA) require local settings to set plans for children with disabilities to receive the necessary services while in school and to successfully transfer from school. This law mandates many of the services available to children with disabilities.

• The Olmstead decision requires states to provide services to the extent reasonably possible in the least restrictive environment and for service recipients to receive services in a reasonable amount of time. The term ‘reasonable’ has sparked several ongoing lines of litigation.

• The Deficit Reduction Act (DRA) of 2005 made it more difficult to qualify for Medicaid to pay for nursing home care ‐ mostly having to do with how and what assets are counted. These changes have lengthened the time it takes to become eligible due to the difficulty many have in obtaining the required documents and has affected legislation/case rulings on HCBS issues as well. The DRA allows states to offer waiver services under the state plan though very few states have opted for this change.

• The American Recovery and Reinvestment Act (ARRA) of 2009 prohibited states from reducing Medicaid eligibility to a level below that effective as of July 1, 2008 if they wanted to qualify for additional federal funding. The PPACA of 2010 extended this prohibition until January 1, 2014 for adult and October 1, 2019 for children. There are an increasing number of states ‘opting out’ of certain qualifications and thus refusing federal dollars for Medicaid, the complete impact of which is still being assessed for persons with developmental disabilities.

• As noted, the PPACA of 2010 allows states to cover individuals up to 300% of federal poverty level and requires states to maintain their Medicaid eligibility standards as of March 23, 2010. The full effect of implementing the PPACA is still a matter of speculation, and will be for some time, but some organizations, e.g. the Center for Medicare and Medicaid Services (CMS) provides guidelines and oversight to states. States are adapting through the use of


comprehensive waivers that allow them to make changes to the services offered without having to wait for federal Medicaid law to change first and is also helping states adjust more quickly to PPACA guidelines. In 2005 CMS changed its policy that allows the incorporation of “budget authority” (cash and counseling) into any waiver, paving the way for greater individual control over the use of waiver dollars.

• States are permitted to refuse eligibility for waiver services for individuals whose cost of HCBS would exceed that of institutional costs (waiver regulations 42 CFR 441.301(a)(3)).

• Since states are not allowed to develop separate service packages under a single waiver, support waivers have been created and operate side‐by‐side with more comprehensive waivers. States are allowed to set a dollar limitation on a support waiver that is less than the average cost of institutional services. Thus, states are using the support waiver to better control costs and provide limited services to those on the wait list prior to becoming eligible for full waiver services. This appears to have had a corollary effect of changing state policies to be more person‐centered. Further, some states are attempting to consolidate their waivers to streamline administrative costs. Some fear with justification that this will result in reductions beyond administrative costs, forcing diverse groups to compete for now pooled and reduced resources.

• States have created councils and coalitions (in statute) to further work related to developmental disabilities. These groups engage in advocacy and advise in matters related to legislation and policy.

• Policy and challenges to policy have affected how states interpret, implement and justify Federal law. The California Lanterman Act (1969) outlines the rights of individuals with developmental disabilities and the services that can be obtained. The Act does not allow California to limit services or cap expenditures for services to individuals with developmental disabilities, a fact that opponents blame for the unsustainable cost to California. One response from California was development of the Family Cost Participation Program which stipulates the family may have to pay a portion of the cost for certain services based on a sliding scale and only if the family income is at or above 400% the federal poverty level.

• In Nevada, the state is responsible for waiver services but counties are responsible for nursing home care. Having institutional funds separate from HCBS can make the re‐balancing efforts more difficult because it has proven very difficult to move institutional funds to HCBS as individuals move from institutions to the community with powerful lobbying interests on both sides.

7. Wait List Related

Information on the process of assessing for, placing on, and assistance directly related to persons on wait lists in states was found to be surprisingly scant. There is considerable information on waivers and some language regarding attempts to support persons on the wait list, but the wait list itself seems to be viewed as an extension of the waiver. The result appears to be a fundamental oversight in


understanding the experience and needs of persons on the wait list, across states, with the assumption that their needs and experiences are identical to those on the waiver or that are still receiving school‐based services. The additional methods planned in the research design will help to illuminate some of the specific interests and concerns of persons on the Florida Wait List.

States vary in the way they categorize those on the wait list. All states reviewed have some form of high‐risk/crisis categorization that determines if an individual receives priority status on the wait list or even immediate services. Those that are categorized as high‐risk/crisis are in imminent danger of institutional placement. In most states, those that are high‐risk or in crisis of institutionalization get priority placement on the wait list for services, though this does not always result in sufficient services in a timely manner.

It is important for accurate eligibility assessment that workers are knowledgeable in special provisions and rules that affect eligibility for people with developmental disabilities. For example, staff that work in Medicaid State Plan eligibility need to understand the different requirements that apply to those with developmental disabilities so these individuals are not denied services when they would qualify under the medically needy category and also understand how to instruct them in applying for waiver services. Comparability across states is difficult as different states use different assessment tools/options.

Some states allow a person to be eligible and on one wait list whereas other states, including Florida and Texas, allow an individual to be enrolled in support waivers and also continue to be wait listed for comprehensive waivers. A comprehensive review of the number of persons on wait lists in the targeted states and how this number has changed over time, and why, is in the process of being completed.

8. Waiver Specific Information

There are some fundamental similarities in how states administer their HCBS waivers but also a wide degree of variability that appears related to political, historical, and economic contexts. As noted, states can set hard limits, which set a ceiling on benefits or set a cost average which allows for some to be above the average assuming others will be below the average sufficiently to achieve a balance. One way states can also control costs without imposing a hard cap is to impose service limitations. Service limitation policies, practices, and reasons are currently being evaluated for the final other state analysis report. Some current points of interest regarding waivers include:

1. As of 2010, less than half of Medicaid long‐term care spending was on HCBS even though HCBS is less expensive and preferred by individuals and families.

2. In 2007, average HCBS waiver funding per person ranged from $5,000/yr in South Dakota to $52,000/yr in Connecticut. Florida per participant funding was $8,700 with a funding limit of $14,700.

3. Analysts project that states will spend nearly $1.6 trillion dollars on Medicaid funded long‐term care over the next two decades (both waiver and institutional).

4. Differences in waiver costs vary among groups and are dependent on the intensity of the services particular to a certain group and the extent to which state plan services can meet the


group needs. This is common sense, but the consensus of state policy and implementation analysts is that the continued movement away from services meant to maintain community residence results in more crises, higher costs, and reduced resources for others, a vicious and perpetual cycle.

The capacity for states to select their own eligibility and waivers is important to consider as this may impede strategies successful in some states from being transplanted to Florida because of differences in this crucial point of context. This reinforces the need for in‐depth analysis of state systems. For instance, California requires families to pay a share of service costs based on a sliding scale for waiver services. Share of cost and changing eligibility are two criteria for cost containment that are being considered by multiple states. Eligibility criteria can include age, diagnosis, and other factors that can determine scope of services offered under a waiver. In a document from 2010 from the Center for Health Care Strategies, Inc., titled “System of Care: Environmental Scan of Medicaid‐Funded Long‐Term Supports and Services,” it was noted that increasing demand for services was being met by enforcing higher eligibility standards for HCBS, essentially reinforcing Medicaid’s institutional bias. However, Iowa in 2005 placed a provision in the Iowa Care Act that established a higher eligibility for nursing homes than HCBS waivers and appropriated funding to virtually eliminate their wait list. It is not clear if this has been implemented and supporting documentation is being sought.

Sample of Other State Strategies or Efforts to Address their Wait List

The following narrative begins the process of summarizing information on some potential strategies or, in the majority of cases, ideas that may be structured into actionable strategies. The risk of posing any list of strategies, regardless of their level of detail, is that this will guide the development and limit the recognition of other strategies from the many other research tasks planned. The Task Force and reviewers of this report are reminded that this is a very preliminary list of possible, not absolute, ideas that may influence strategy development and is in no means comprehensive. The following ideas for potential strategies are loosely grouped into four categories.

Policy and Implementation Ideas

• When states combine their institutional care and HCBS budgets, there is more flexibility in balancing care because as people move from institutional services, the state has more flexibility in moving money from institutional care to HCBS care. Since 2010, Oregon, Washington, Vermont, Ohio and New Jersey have adopted this type of policy.

• Agencies that act as a Single‐Point‐of‐Entry (SPE) are found to be helpful to families who are working to access services. Several states are currently working to establish SPEs to make accessing services more efficient, but those who do not have SPEs or are transitioning to the use of SPEs are finding many families frustrated with trying to understand and navigate the system. The goal of a SPE agency is to give individuals and families a single outlet for information on services. An example of a SPE that many states are creating through CMS funding is Aging and Disability Resource Centers (ADRC). Changing to SPE requires appropriate legislation and policy changes.


• Risk‐based managed care (RBMC) is touted as positive for cost‐containment and may improve access and quality of care when appropriately administered. The usual concerns with managed care exist, including high overhead, denial of needed services, and capping existing services to the point that they lose effectiveness. The research team is accessing additional information from states that are considering or undertaking trial implementations of RBMC.

• Some states are ‘consolidating’ their waivers into new fewer comprehensive waivers to the degree legally allowed, with challenges to support further consolidation ongoing. Ohio and Colorado are working through this consolidation process. This can streamline services that may be confusing for individuals and families that are accessing or attempting to access services from multiple waivers. It also streamlines administrative costs (overseeing one waiver rather than multiple waivers). Currently, though full consolidation is not allowed, states may share definitions, service providers, and reimbursement rates.

• Some states, e.g. Oregon, South Carolina, and Vermont, are merging their agencies that oversee long‐term care services into one agency that oversees both institutional and HCBS for persons with developmental disabilities and the elderly.

• In 1999, Pennsylvania developed a long‐term plan for their wait list. Recommendations from this plan sought to make changes that would not only address the immediate wait list issues but also establish a mechanism that would allow the state to continue to meet the needs of those on the wait list in the future. Recommendations in this plan include restructuring administration to ensure quality, efficiency, and positive individual/family outcomes, unify funding and reinvest savings from rebalancing (institutional to community settings) through community services and establishing an ongoing process to review and respond to the wait list. Communication with Pennsylvania continues and further detail of their process is expected.

• In 1969 California passed Lantermann Developmental Disabilities Services Act (the Lantermann Act). This law outlines the rights of individuals with developmental disabilities and their families, how agencies and staff can help these families, what services and supports are obtainable, and how to use the individualized program plan.

• Illinois requires all adults seeking developmental disabilities services to apply for Medicaid. In Illinois, a person can have both private insurance and Medicaid, which could potentially provide more choices for services/providers.

CommunityBased Ideas

• Creating a strong infrastructure at the community level has proven important in avoiding institutionalization and promoting quality services. The process of fostering infrastructure has included the use of coalitions, task forces, and other bodies of self‐advocates, parents, and professionals. The process of developing community infrastructure is a target of additional analysis for the final other‐state report.

• The employment first approach is enjoying a degree of national focus and champions training and employment of individuals with developmental disabilities so they may contribute to the


cost of care, experience greater inclusion, and have fewer crises that are often costly and devastating to the individual and their families. Nearly all states targeted in this analysis are working to increase employment for the reasons noted.

• California has implemented a number of programs, e.g. Foster Grandparents and Senior Companions Programs, that match elderly individuals with children with developmental disabilities (foster grandparent) or a person with a developmental disability 18 years or older (senior companion). This increases the level of community support and may have a stabilizing effect as well as providing respite for families. California has also started a Wellness Initiative that works towards ensuring access to medical, dental, and mental health resources. California also developed the California Wellness Partnership that brings experts and public leaders together to work on this initiative. A third initiative is the Physicians Assistance, Consultation, and Training Network (PAC Net) that provides phone consultations to physicians with patients with developmental disabilities. The phone consultations are provided by specialists at University of California, Davis.

• Noted previously, Illinois and Kentucky use microboards, which are small non‐profits usually made up of an individual, a family member and a friend to help find and develop services and supports for the individual. In Illinois, microboards are supported by the Illinois Council on Developmental Disabilities. Microboards are not designed for just three individuals, as a microboard serving four or more individuals is referred to as a cooperative.

• New York, Arkansas, and Georgia have joint training programs that provide training to family caregivers, professionals, and direct care workers. This builds a team approach and reduces the stress and responsibility on any one individual. Including the person with a developmental disability as part of the team enhances inclusion and independence.

Service Delivery for Wait Listed Ideas

• Targeted case management for wait listed individuals is being investigated by some states. Targeted case management services are exempt from comparability requirements (that all services are available to all who qualify for the state plan) and can be limited in population served unlike most services guided by Federal law in state plans. Wyoming already makes target case management services available to those on the wait list for waiver services.

• Colorado and Washington have fast track programs that expedite the eligibility process to help individuals access services more quickly. It is unclear how this will impact wait listed individuals and additional research is being completed. This has been found to be helpful when an individual is transitioning from hospital care and needs long‐term care services in place, though whether this is in a facility or community‐based setting, or both, is being reviewed. A fast track program can help people avoid entering institutions and stay in their chosen community setting. New Jersey also has a pilot program that uses presumptive eligibility for services by searching the state’s pharmacy assistance to the aged and disabled database and a separate database for low‐income individuals who receive state services. New Jersey assumes that if an individual is in either of these databases, then they would also be eligible for HCBS.


• The use of state‐wide technological programs can help support assessment, assist in service planning, track services, manage crises, and help ensure that individuals in similar situations receive comparable services. Washington uses the Comprehensive Assessment Reporting Evaluation (CARE). This tool is used during in‐home visits and allows staff to simultaneously gather information on the client’s needs, create a service referral, and track follow‐up.

Capacity, Inclusion and Independence Ideas

• A North Carolina program called Beyond Academics is a program that allows individuals with intellectual and developmental disabilities to participate in inclusive integrated college experiences. This type of program is being duplicated in other states as well. This and other programs targeting independence and possibly impacting the wait listed individuals are being reviewed as possible strategies. The review will take into consideration any available effectiveness and cost information.

• Washington State has a Life Opportunities Trust that is a public/private saving option for those with developmental disabilities. The money in this trust does not affect eligibility for state and federal programs. The money is used to provide services and supports, though how it is provided to members, whether there are caps, what is the cost to families, and other questions continue to be addressed.

• Kentucky has a state funded program that allows any individual that has a disability recognized under ADA to apply for a Hart Supported Living Grant. These grants help individuals to live in, contribute to, and participate in their communities. The cost‐benefit, scope, and other aspects of the program are under review.

• Real Choice Systems Change (RCSC) is a CMS grant that helps states address issues like transitioning from an institution to a community setting, direct‐worker shortages, respite services, quality improvements, and person‐centered care planning. Aspects of the grant and whether Florida can participate or would benefit are being assessed.

Analysis Plan and Objectives

A fully articulated and detailed analysis plan is essential to maintain focus and extract maximum direction and quality from the large amount of data obtained for this project. The following objectives are being targeted for analysis of information obtained from other states. Objectives 1‐4 are relevant to this stage of the project.

Other State Analysis Objectives

1. Obtain and review information from selected states that relates to their wait list and waiver system and compile said information for analysis.

2. Complete a literature search, including reviewing citations of all peer reviewed articles obtained, to develop a list of peer reviewed articles/papers to include in the detailed other state analysis, with the understanding that some sources may cite Florida directly.


3. Analyze material based on a priori categories of information that may yield actionable strategies that can be compared to Florida information, to include but not be limited to:

a. Legislative, policy, and legal materials

b. Waiver and wait list implementation and support documentation

c. Provider and service delivery information

d. Self‐advocate and family information

e. Previous strategic planning efforts targeting the wait list or service system in general

4. Make direct contact with key stakeholders in each of the selected states to ask for additional material that may not appear currently in the public domain.

5. Determine possible factors for per capita differences in wait list numbers between states by completing within and between category analyses.

a. For states with high numbers of wait listed persons, compare for similarities and differences

b. For states with low numbers of wait listed persons, compare for similarities and differences

c. Compare states with high and low numbers of wait listed persons

6. Use the results of the other state documentation analysis to inform the development of a targeted semi‐structured interview guide. Once developed, use the guide to conduct interviews, recording each interview for targeted transcription.

7. Determine differences and similarities between documentation and interview information and finalize a set of strategies potentially relevant to Florida.

Analysis Plan

Documents were divided by content into the following categories, with each category analyzed separately using the same coding structure. Codes developed were common to each analysis because of the large amount of crossover information between categories but still having the need to focus on specific content areas. This meant that some analyses used some codes with greater frequency. In addition to the initial codes, additional codes were developed when appropriate and shared across analyses. This results in a large number of codes, necessitating that each member of the coding team familiarize themselves thoroughly with the initial codes and be willing to develop additional codes that capture new content areas or are important variations of current content areas. Documents from other states were assigned to the ‘best fit’ with content areas 1‐5 listed below. The sixth content area, peer reviewed and other vetted sources, will be a source of information for the second cycle of analysis described below.

1. Policy and Legislation

2. Wait List, Waiver and Medicaid


3. Services, Service Delivery and Providers

4. Strategic Plans and Strategic Planning

5. Costs, Cost‐Benefit and Budgets

6. Peer Reviewed and Other Vetted Sources

Each team member was trained to follow the same qualitative coding best practices, to use cross‐coding, and to co‐code with a team member for the first several documents to increase coding reliability. Cross‐coding uses multiple codes for the same passage when more than one meaning is detected. Few documents for this analysis were so focused as to not require the use of cross‐coding, which increased understanding of the material but also impacted the time needed to code thoroughly. The analysis of documents from other states combined the following broad first cycle coding methodologies.

1. Provisional Coding: The initial code list was developed after an initial review of the peer reviewed literature and other documentation. A peer review process lends confidence that codes derived from empirically supported information have maximum relevance to a project. Thus, a provisional coding process, named as such in the qualitative best practices literature, requires completion of background research to develop a useful initial coding structure. Having confidence in an initial coding structure supports confidence in results.

2. Structural or Purposeful Coding: This coding method emphasizes the use of initial and post hoc codes to meet the objectives of the Wait List project by finding material relevant to objectives in the accumulated data, especially detecting potential strategies that may be transferable to Florida. Thus, the code structure was created and coding completed in part to meet project objectives but was also thorough enough for the research team to improve their contextual knowledge that in turn increases the probability that potential strategies will be identified. A recursive process is common to qualitative analysis and leads to understanding the material in‐depth.

3. Convergent and Divergent Coding: Coding to find similarities as well as contradictions or discrepancies within and between different states was completed to determine what is being done in the targeted states to address their wait lists.

The following is an alphabetical list of the first cycle initial codes:

1. Barriers to Service or Support Delivery

2. Caregiver or Family_Need

3. Caregiver or Family Service

4. Community Support_Need

5. Community Support_Services

6. Community Support_Respite

7. Community Support_Transportation

8. Comorbid Conditions

9. Consumer Choice/Self‐Direction

10. Costs/Expenditures_Comparisons

11. Costs/Expenditures_for Services or Supports

12. DD_Autism


13. DD_Cerebral Palsy

14. DD_Intellectual Disability

15. DD_Spina Bifida

16. DD_Prader‐WIlli

17. DD_Down Syndrome

18. Federal Law/Regulations_Description

19. Federal Law/ Regulations_Implementation

20. Hospitalization/Institutionalization

21. Independent Living

22. Informal Services or Networks

23. Insurance_Medicaid Coverage

24. Insurance_Other than Medicaid

25. Legal Challenges to policies or practices

26. Legislation_Comparison

27. Legislation_Change In

28. Legislation_Implementation

29. Policy_Change In

30. Policy_Comparison

31. Policy_Medicaid

32. Policy/Service Models

33. Provider_Service Providers

34. Satisfaction_Waiver System

35. Satisfaction_Service Delivery

36. Services/Supports_Unmet Needs

37. Strategy_Cost Efficiencies

38. Strategy_Empirical Support

39. Strategy_Potential

40. Transitioning

41. Rural/Urban

42. Waitlist_Access and Implementation

43. Waitlist_Costs or Expenditures

44. Waitlist_Numbers on List

45. Waiver_Costs or Expenditures

46. Waiver_Developmental Specific Comparison

47. Waiver_Eligibility and Number of Services

48. Waiver_Implementation

The second cycle of coding, currently in progress, will meet three additional purposes:

1. A more in‐depth analysis of cross‐coding to better understand how information is related and how this affects development of policies, practices, and strategies in other states.

2. A comparison of state information against peer reviewed information collected and analyzed using the same coding structure as described above. This will reinforce specific strategies, with the assumption that state practices that have empirical support in peer reviewed literature are intrinsically of greater quality than strategies that do not. It is understood that not all that states do correspond with what is published and that this is likely to be an additional emphasis for specific strategies and not a necessity.

Use cycle 1 and cycle 2 results to complete other state analysis objectives 4‐6 described at the beginning of this section.

Developmental Disabilities Wait List Strategic Plan ......Research, Evaluation and Systems ......

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