White Paper: OSP/OBRA Waiver Renewel Eligibilty

COMMENT ON: Pennsylvania's OSP/OBRA Waiver Renewal and Amendment, effective July 1, 2001 (a waiver of Section 1915(c) of the Social Security Act to provide home and community-based services to persons who would otherwise require ICF/ORC services)

OVERVIEW OF ALAW'S CONCERNS:

-In April 1998, ALAW presented a paper to the Pennsylvania Department of Public Welfare which demonstrated that adults with autism are entitled to ICF services under federal Medicaid rules.

-In a subsequent meeting, DPW agreed with ALAW's position, and proposed the initiation of a pilot program to provide home and community-based services to adults with autism.

-The pilot program was to be planned and implemented by DPW and AL-AW in partnership.

-The DPW/ALAW working group was formed, and the pilot program to serve 20 adults with autism was planned over the course of multiple meetings.

-The planning included eligibility criteria, specifying that adults across the autism spectrum be included in the pilot program.

-Following DPWs recommendation, pilot program funding comes from the OBRA Waiver.

-By early 2002, the first phase of the pilot program was completed, and the second phase was partially completed.

-Unaccountably, DPW convened a meeting of stakeholders to suggest changes to the OBRA Waiver, but did not include AL-AW.

-The OBRA Waiver's new eligibility worksheet screens out those with lQs under 70, who are to be served by the MR system. This is a violation of autism pilot program eligibility criteria agreed to years ago. If allowed to stand, this would force large numbers of people with autism into the NM system, where they would receive inappropriate services or, more likely, be put on a waiting list.

-We need to return to the original pilot program eligibility rules, so that adults across the autism spectrum remain eligible for OBRA Waiver services.

SPECIFICS OF ALAW'S CONCERNS:

BACKGROUND OF ALAW'S RELATIONSHIP TO DPW AND THE OSP/OBRA WAIVER:

In April 1998, ALAW presented a paper on "The State of Autism Services in Pennsylvania" to officials in the PA Department of Public Welfare. As a result of ALAW's demonstration that persons with autism, a developmental disability, are entitled to ICF services under federal Medicaid rules, DPW agreed to begin developing home and community-based autism services via a pilot program. A series of meetings were convened between ALAW and DPW staff, with leadership by the Office of Social Programs, to develop an Autism Pilot Program for 20 persons.

In the course of these DPW/AIAW Work Group meetings it was agreed that eligibility for the Autism Pilot Program would be based on having autism regardless of whether the person did or did not also have a low IQ. Indeed, it was agreed that Pilot Program participants should represent the spectrum of those with autism. It was also agreed, upon recommendation of the Office of Social Programs staff, that funding would come from the OBRA Waiver.

Over the past year, individuals and advocacy groups considered 'stakeholders' of the OBRA Waiver were convened to provide input to the waiver renewal and amendment process. But neither ALAW, nor any of the individuals in the Autism Pi@ Program, even though their services were being funded by the OBRA Waiver, were included in the stakeholders meetings. As a result, changes harmful to persons with autism were included in the amended OBRA Waiver.

BACKGROUND OF THE OSP/ OBRA WAIVER AMENDMENT:

OBRA WAIVER TARGETED GROUPS:
According to checkoffs on the federal Medicaid Waiver Format, OBRA services are targeted to:
- individuals who are developmentally disabled
-"Persons with other related conditions, severe chronic disability: which (a) is attributable to cerebral palsy, epilepsy or any other condition found too [sic] closely related to mental retardation, but not mental retardation or major mental disorder as a primary diagnosis..." (bold [in original] represents amended language)

OBRA WAIVER ELIGIBILITY WORKSHEE'F:
The purpose of this new worksheet is to assure that applicants meet the waiver targeting criteria. The worksheet first asks for primary and secondary diagnoses. After a list of "general exceptions" there are "mental retardation exceptions" followed by "mental illness exceptions." If any of these items are checked "yes" the applicant is screened out. Under "mental retardation exceptions" are the following:
"1. Does the consumer have a past or current Primary Dx of Mental Retardation?
2. Does the consumer have a documented IQ below 70?
3. Does the consumer receive services through an MR Waiver?"

BACKGROUND OF FEDERAL RULES:

FEDERAL DEFINITIONS OF "DEVELOPMENTAL DISABILITY," "OTHER RELATED CONDITION," AND "AUTISM":
In the Medicaid Manual, interpreting the "Requirements and Limits Applicable to Specific Services" §4398. Persons with Related Conditions, Rev. 23 (dated 12-86), HCFA discusses changes in the definition of "persons with related conditions" found at 42 CFR §435.1009. HCFA states: "Concern has been expressed that the new definition of 'persons with related conditions' does not include autism, although this diagnosis had been included in one of the earlier definitions of developmental disability. Autism is a disorder which is developmental in nature and which routinely requires treatment similar to that provided to individuals who have mental retardation and persons with related conditions. In fact, the DSM 111, which is universally recognized as authoritative by the medical community, specifically classifies autism as a pervasive developmental disorder."

The above cited Medicaid Manual interpretation shows that under federal Medicaid rules, autism is a "developmental disability" and also an "other related condition."

ANALYSIS OF THE OSP/OBRA WAIVER RENEWAL AND AMENDMENTS IN RELATION TO CRITERIA FOR AUTISM:

The newly developed OBRA Waiver Eligibility Worksheet (see also above) is intended to determine if an individual applicant meets the amended OBRA Waiver targeting criteria. The worksheet begins by asking for the person's primary and secondary diagnoses. If the person's primary diagnosis is "mental retardation" or a "major mental illness," then according to the waiver targeting criteria, that person would not be eligible. If the person passes this initial screen, it would then be appropriate for the worksheet to inquire if the person's primary diagnosis is a "developmental disability," and if it is also an "other related condition," two other OBRA Waiver targeting criteria.

As long as the person's primary diagnosis is not "mental retardation" or "mental illness," and the person's primary diagnosis is a "developmental disability" and an "other related condition," the person qualifies, according to the amended targeting criteria in the federal waiver format.

However, instead of the above cited process, the OBRA Waiver Eligibility Worksheet introduces additional criteria to the eligibility process that are not part of the amended waiver format criteria. As such they are not appropriate issues to weigh in determining whom to exclude. Examples of illegitimate criteria used in the OBRA Eligibility Worksheet are as follows:
-The worksheet asks about past as well as current primary diagnosis for mental retardation (although the worksheet asks specifically for a CURRENT [caps in original] diagnosis for mental illness.) Only a person's current diagnosis should be utilized, as prior ones may have been inaccurate.

-The worksheet asks about low IQ which, while part of the diagnosis of mental retardation, can also be a component of developmental disabilities and of other related conditions. Merely having a low IQ does not determine correct primary diagnosis.

-The worksheet asks about MR waiver funding for services. While a person cannot receive services from two waivers simultaneously, current receipt of services from one waiver should not preclude future funding by another waiver. Moreover, primary diagnosis cannot be deduced from the funding category of services being received.

IMPACT ON AUTISM PILOT PROGRAM PARTICIPANTS AND OTHER PERSONS WITH AUTISM THROUGH USE OF THE OSP/OBRA WAIVER ELIGIBILITY WORKSHEET:

The "mental retardation exceptions" described and analyzed above constitute a grave problem both for persons currently in the Autism Pilot Program and for other persons with autism seeking services under the amended OBRA Waiver. Some cur-rent Pilot Program participants, who were enrolled in the Autism Pilot Program under criteria established by the DPW/ALAW Work Group, would not be found eligible under this erroneous worksheet. Furthermore, people with autism who could be served under the OBRA Waiver in the future would be inappropriately excluded as well.

Either the OBRA Waiver Eligibility Worksheet must be revised to correct these problems, or else applicants must be able to mark "N/A" as a response to items on the current form under "Mental Retardation Exceptions" without prejudice in determining eligibility.

OSP/OBRA WAIVER ELIGIBILITY WORKSHEET