Public Policy

Redesign of Medicaid Children’s Developmental Disability Services

Docket # 16-0310-1002

Testimony of DisAbility Rights Idaho

DisAbility Rights Idaho (DRI) is the designated Protection and Advocacy System for people with developmental disabilities in Idaho pursuant to 42 USC Sec.15041-15045.

DRI supports the concept of redesigning Medicaid children’s developmental disability (DD) services to reflect the diverse circumstances of children who need these services. The creation of Medicaid funded respite care, family education, and habilitative support services helps to meet needs which are not well addressed by the current developmental therapy services.  There is a need for supportive services which do not require measured outcomes and taking of clinical data.

DRI also supports the development of “family directed services” which give families more control of the types and amounts of services and greater flexibility in selection of the provider of the services.

We do however, have concerns about the specific rules proposed to accomplish these changes.

I.          Intervention Services should not be denied to all children with developmental disabilities who do not meet the ICF/ID level of care.

The proposed Rules make respite care and habilitative supports available to all children with developmental disabilities who can demonstrate a need for the service, but services which are intended to build skills and decrease maladaptive behavior are restricted to children who are found to require the level of care provided in an ICF/ID (formerly ICF/MR). The ICF/ID level of care standard was developed in the 1970’s when institutional placement was a routine method of providing care for people with developmental disabilities. The standards articulated for the level of care included criteria for treatment of people who were labeled “mildly mentally retarded”.  In the following forty years, institutional placement has become disfavored as a model of care, and the development of home and community based services and supports is rapidly making institutional models of care superfluous.  The 1970s standard of ICF/ID level of care has lost its original meaning and is difficult to apply in today’s circumstances.  Although it is still used for admission to ICF/ID facilities, and eligibility for the HCCDC program, application of the standard is not uniform or clear.

ICF/ID level of care is not the same as the need for structured professionally supervised interventions. Many children with DD may require structured clinical interventions to learn essential skills or to change behavioral patterns which will affect their ability to achieve their potential and succeed in life.  Many conditions which cause developmental disability are progressive in the sense that the discrepancy between the skill level of the child with a DD and that of a typically developing child grows more pronounced over time, and that this tendency is exacerbated by a failure to intervene with powerful evidence based techniques such as applied behavior analysis.  Very young children with Down Syndrome may have achieved developmental milestones within the average range. However, we can predict that over time the child will fall further behind his peers. It is also well accepted that structured interventions can significantly reduce these differences. Not all children who need and can benefit from such interventions will be found to meet the ICF/ID level of care.  Rather than providing services which have the best chance of ameliorating the condition at the time when they are most effective, this approach would delay intervention until the child has already fallen far behind his typically developing peers.  This is manifestly not the “right service” at the right time. Instead, it takes the approach of denying access to services until the condition has gotten much worse and finally requires an ICF/ID level of care. Unfortunately, this is also when the amount of services needed is greater, and the benefits are less. Telling people who need and can benefit from a service to “go away and come back when you are much worse” is not the best way to control access to the service. In many cases it will increase both the person’s disabilities and the ultimate cost of care and services.

The Patient Protection and Affordable Care Act (PPACA) have changed the federal requirements for state plan services. Changes to section 1915i of the Social Security Act (42 USC 1396n(i)) allow states to provide services previously only available as waiver services. These state plan services can be restricted to particular populations with eligibility criteria for access to the service. Making intervention services and other services available under 1915i would allow the Department to fashion criteria tailored to the need for the service without relying on the ICF/ID level of care standard as an arbitrary barrier to access.

Recommendation:  Intervention services and other services in the HCBS waiver section should be included in the HCBS state plan services.

II.         The proposed rules create uncertainty about the availability of Medicaid school based services and misstate federal law.

Schools currently are able to get Medicaid coverage for developmental therapy services for some children under certain circumstances. The elimination of Developmental Therapy as a state plan service and its replacement with the array of services in the proposed rules will change the status of school based services. In addition the Department has included the following language:

a.            HCBS state plan option services cannot be used to pay for special education and related services that are included in a child’s Individual Educational Plan (IEP) under the provisions of Individuals with Disabilities Education Improvement Act of 2004 (IDEA). The funding of such services is the responsibility of state and local education agencies. 1903(c)(3) of the Social Security Act provides that federal financial participation (FFP) is available for service included in an IEP when such services are furnished as basic Medicaid benefits. HCBS state plan option services are not considered to be basic Medicaid benefit, and

b.            Medicaid Waiver services cannot be used to pay for special education and related services that are included in a child’s Individual Educational Plan (IEP) under the provisions of Individuals with Disabilities Education Improvement Act of 2004 (IDEA). The funding of such services is the responsibility of state and local education agencies. Section 1903(c)(3) of the Social Security Act provides that federal financial participation (FFP) is available for services, included in an IEP when such services are furnished as basic Medicaid benefits. Waiver services are not considered to be basic Medicaid benefits.

Both of these sections misstate the federal statutory language. There is no distinction between “basic” Medicaid services and other covered services. The relevant statutory language is:

42 U.S.C. 1396b(c) Treatment of educationally-related services    -   Nothing in this subchapter shall be construed as prohibiting or restricting, or authorizing the Secretary to prohibit or restrict, payment under subsection (a) of this section for medical assistance for covered services furnished to a child with a disability because such services are included in the child's individualized education program established pursuant to part B of the Individuals with Disabilities Education Act [20 U.S.C. 1411 et seq.] or furnished to an infant or toddler with a disability because such services are included in the child's individualized family service plan -adopted pursuant to part C of such Act [20 U.S.C. 1431 et seq.].

Since the federal statutory language refers to all “covered” services and not to “basic” services, the rule is a misstatement of federal law and may also be a violation of the relevant statute.

Recommendation: The impact on school based services, as well as the coverage of the services provided by a non-school provider in the school setting should be clarified and the inaccurate statements about federal Medicaid law should be removed.

III.        Definition of “Plan Developer”

Plan developer is defined as:   A paid or nonpaid person identified by the participant who is responsible for developing a service plan and subsequent addenda that covers all services and supports, based on a family-centered planning process. The plan developer acts as the plan monitor by overseeing the provision of services on the plan of service on a paid or non-paid basis. (emphasis added)

But in another section it says:

Qualifications of a Paid Plan Developer:  The paid plan developer must be provided by the Department or its contractor.

The second section suggests that plan development will be provided by the department or a single department contractor.  This would be inconsistent with the developer being “identified by the participant.”  If “its contractor” refers only to the Medicaid provider agreement, it could be clearer.  If the intent is to limit plan development to one or a few contractors, that should be more clear. My recollection is that the steering committee assumed that this would be an "any willing provider" service.

IV.        Provider Qualifications

Several provider types are required to “complete competency coursework approved by the Department to demonstrate competencies related to the requirements to provide” the service in question.  I am unaware of any efforts to create such coursework or to insure it is provided on a statewide basis to insure that there are a sufficient number of providers of the services.  I hope that such courses are adequately available before the implementation of these rules. Otherwise children will be deprived of services solely because there are no certified providers in their area.

V.         Mileage Reimbursement

The proposed rules state: “The reimbursement rates calculated for children’s HCBS include both services and mileage. No separate charges for mileage will be paid by the Department for provider transportation to and from the participant’s home or other service delivery location when the participant is not being provided transportation”

By bundling the cost of mileage into the rates, the rules unintentionally create an incentive to avoid providing services in rural areas. The investment of time in travel already is a discouragement to providers to accept clients at a distance from the provider’s location.  Even if the rates are adequate, the financial incentive will be to minimize travel costs. Paying for travel by the mile may not be the only way to encourage broader geographical coverage. Travel costs have increased sharply in recent years.

Recommendation: The rules should be changed to allow compensation for travel to rural locations to provide services.

VI.        The Act Early Waiver.

The Act Early waiver is limited to children with autism spectrum diagnosis between the ages of 3 and 6 years.  Because many children are not diagnosed until they are 4 or 5 years old, this unnecessarily limits the program to a very short period for children who may need and could benefit from it.  We understand that the model is one specifically designed for young children and that the optimal age for the intervention is 3-6.  However, that does not mean that a seven year old cannot benefit from the intensive services contained in the waiver.  Also requiring that a child have both a maladaptive behavior score of -22 or less and a functional level at 50% of chronological age is unwise. For the very young children to which this waiver applies, a 50% deficit will screen out some of the children who are most in need of the waiver services and most likely to benefit from it. This should be changed to one or the other or else the 50% requirement should be dropped.

Recommendation: The eligibility should be extended to at least 8 years of age, or more if a child’s circumstances warrant it and the 50% functional level score should be eliminated.

VII.       Waiver Eligibility

Section 682 (c) states: the average annual cost of waiver services and other medical services to the participant would not exceed the average annual cost to Medicaid of ICF/ID care and other medical costs.

This section sounds as if the cost element must be individually determined as opposed to aggregate determination of cost effectiveness. If this is the intent of the section, we must strongly disagree. There are many reasons to use aggregate cost effectiveness in this waiver as Idaho does in all of its other waivers. One of these reasons is that it can exclude children who need the services and force them into an unwanted out of home placement. It also imposes an unnecessary and potentially burdensome step in the eligibility process.  For children who may qualify for a special rate in an ICF/ID or who may be at risk for placement at ISSH, the use of the “average annual cost” of ICF/ID placement is not even accurate for cost effectiveness purposes.

Recommendation: Replace the individual cost effectiveness standard with an aggregate standard.

VIII.      Budgets

We have consistently objected to the way that budgets are calculated for people receiving DD services. Budgets should be based on the services needed by each individual. With the proposed rules’ emphasis on more thorough and independent evaluation and assessment, the case is even stronger for a budget based on the individually assessed needs of the child.  It only makes sense that if the assessment (not just the scores and diagnoses) drives the plan, it should also drive the budget. Statistical models of budget setting always have outliers and rarely match more than 85% of the budgets based on individual assessment and planning. These systems are successful only when they are flexible enough to accommodate the outliers and the 15% of people who don’t quite fit in the model.  When the model appears to be working because people develop plans within the budget, the statistics appear to confirm the process. But since the budgets force some people to request fewer or less effective services, and encourage others to inflate the services to match the budget, this is not a confirmation of the statistical prediction.  The rules should explicitly provide for flexibility to insure the adequacy of services for people who are statistical outliers.

Recommendation: Change the method to set budgets based on plans developed pursuant to thorough independent assessments. Failing this, explicitly allow for individual variations based on unusual circumstances and needs.

IX.        Qualifications, training, rates and infrastructure.

These rules represent a huge change in the system which can be beneficial if all of the pieces are in place and they work together. At this point, we do not know what training will be required for several of the providers in these new services. We do not know how the training will be provided or by whom. We do not know specifically how budgets will be calculated, or how rates will be set. Any of these variables could create huge problems for access to the services and for quality of the services. Some of these details do not need to be in the rules, but it is difficult to know whether we can support some of the changes without knowing how these issues will be addressed. We could give a better assessment of the proposed rules if we had a better picture of the infrastructure which will support the system created by the rules.

Submitted by James R. Baugh, Executive Director

DisAbility Rights Idaho

4477 Emerald St. Boise, ID 83706

(208) 336-5353, jbaugh@disabilityrightsidaho.org