Re: Healthy Pennsylvania 1115 Demonstration Application
Thank you for the opportunity to comment on Pennsylvania’s 1115 Demonstration Application. These comments are presented on behalf of the Autistic Self Advocacy Network. The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for Autistic people. ASAN was created to serve as a national grassroots disability rights organization for the Autistic community, and does so by advocating for systems change and ensuring that the voices of Autistic people are heard in policy debates and the halls of power while working to educate communities and improve public perceptions of autism. ASAN’s members and supporters include Autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators and friends. We believe people with disabilities should have equal and unhindered access to employment, transportation, public accommodation, and, of course, health care.
We insist that CMS not approve the application, as submitted, pending the completion of an extended legal review as the application discriminates against individuals with disabilities and, as such, violates the Americans with Disabilities Act (ADA). We know firsthand the ADA’s positive impacts on the lives of disabled individuals. The federal government, through its Justice Department, has been strong enforcers of ADA violations. Accordingly, we find Pennsylvania’s Application deeply alarming because it violates ADA principles as well as the Olmstead decision granting individuals with disabilities rights to live and fully participate within the community. Approving Pennsylvania’s Application as submitted thwarts past ADA enforcement efforts and violates the law.
- 1. Pennsylvania’s Application Violates the Americans with Disabilities Act and the US Supreme Court’s Decision in Olmstead
Pennsylvania’s Application violates the Americans with Disabilities Act by discriminating against disabled individuals at risk of immediate institutionalization. The ADA’s “integration regulation” states “[a] public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” Integrated settings provide individuals with disabilities opportunities to live, work, and receive services in the greater community, like individuals without disabilities.
The US Supreme Court made clear in its landmark decision, Olmstead v. L.C, that people with disabilities have an enforceable ADA right to receive services in the most integrated setting appropriate to their needs. When a state designs and implements a system that unnecessarily relies (even implicitly) on institutional facilities, that state is responsible for segregation. The ADA requires states to place persons with mental disabilities in community settings when the state’s treatment professionals have determined that community placement is appropriate, the community setting is not opposed by the patient, and the placement can be reasonably accommodated, taking into account the resources available to the states and the needs of others with mental disabilities.
Pennsylvania’s Application, facially and as applied, is discriminatory and violates these ADA principles and federal court precedents.
- a. Eliminating the Category of MAWD is Discriminatory and Violates the ADA
We are deeply troubled by Pennsylvania’s request to eliminate Medical Assistance for Workers with Disabilities (MAWD), a Medicaid funded health insurance program for nearly 34,000 significantly disabled individuals who rely on MAWD to live and work in their communities.
The most severely impacted individuals will be the dozens of Pennsylvanians receiving home and community based waiver services through the MAWD eligibility requirements. With the proposed elimination of MAWD, those on waivers with income and/or resources above the state waiver limits (which are more restrictive than MAWD limits) will lose their HCBS waiver and Medicaid. These individuals will no longer have personal care attendants and other services that enable them to keep their job and stay in the community. Pennsylvania’s Application will leave individuals without critical medical and long-term support services; services that have already been approved because they meet an institutional level of care requirement.
Likewise, a significant number of MAWD beneficiaries rely on services provided by the Adult Community Autism Program (ACAP). Under the Application, people in ACAP and MAWD will lose ACAP as well as Medicaid if their income is more than percent of the federal poverty level. Many of these individuals will face significant struggles as they try to stay in the community without ACAP services.
States that eliminate existing community service programs like MAWD violate ADA and Olmstead when they create a risk of institutionalization or segregation. Pennsylvania’s approach is a textbook example of such risk. It is especially disheartening because the cost savings from eliminating MAWD are negligible compared to Pennsylvania’s Medicaid spending as a whole: only $7 million in the 2014-15 Fiscal Year is saved by eliminating MAWD. The US Justice Department’s has challenged states that shirk their duties to “take all reasonable steps to avoid placing individuals at risk of institutionalization.” Eliminating MAWD is discrimination against people with disabilities and as such, is a violation of the ADA and Olmstead. Therefore, we strongly urge CMS to reject portions of Pennsylvania’s Application that eliminate MAWD.
- b. Pennsylvania’s Proposed High Risk Benefit Plan Place Medicaid Beneficiaries with Disabilities at Great Risk of Institutionalization
If CMS approves Pennsylvania’s Application to expand Medicaid, existing Medicaid-eligible individuals with disabilities found to be medically frail and who need home and community based services (HCBS) will be enrolled in the High Risk Plan; an arrangement that did not exist before and that will for the first time place restrictions on nearly every category of medical services. For example, the Demonstration Application places a $2,500 annual limit on durable medical equipment (DME), requiring individuals with significant medical needs to navigate the benefits limit exception process or go without equipment. This is an unworkable standard. If approved, every motorized wheelchair would exceed the limit. Likewise, the $2,500 annual limit on medical supplies is problematic. Physician ordered catheterization kits cost between $220 and $1,000 per month, and would easily exceed the medical supplies limit. We are deeply troubled by these new limits on existing and new beneficiaries with disabilities, many of whom will quickly reach their benefit limit through a single or a combination of DME services; services which keep individuals with disabilities integrated within their communities.
The benefit limits on Medicaid beneficiaries with disabilities run afoul of the ADA’s prohibitions just as the Tenth Circuit Court of Appeals held in Fischer v. Oklahoma, which found a similar group of Medicaid recipients had a justicable claim against their state Medicaid agency which limited recipients to five prescription drugs per month.
We recognize that Pennsylvania proposal places equal benefit limitations on the institutional side. However, the benefit limitations will force individuals with disabilities on waivers into institutions to receive medically necessary care and segregate them from the non-disabled community.
c. Premiums for Medicaid Beneficiaries Violate ADA Protections
If CMS approves Pennsylvania’s Application, in year two, some Medicaid beneficiaries, including those receiving home and community-based services, must pay a monthly premium or lose essential health coverage. Beneficiaries in institutions are exempt. This disparity is troubling and discriminatory. Those found to meet an institution level of care, and trying to stay in the community will have greater financial hardship than their counterparts in institutions. Charging a premium for any qualified individual who has chosen to stay in the community, rather than be institutionalized is discriminatory and violates the ADA.
Here, too, the parallels to Fischer cannot be ignored. In Fischer, Oklahoma had previously provided unlimited prescriptions to Medicaid waiver recipients. The court held the state Medicaid agency’s new limits on Medicaid waiver recipients and no limits for those living in institutional settings was a fundamental ADA issue. CMS should similarly be critical and reject Pennsylvania’s new burden on HCBS waiver recipients.
We recognize that a service benefit limit is not identical to a premium, but the essential issue is that Pennsylvania has proposed a discriminatory burden on HCBS waiver recipients that their counterparts in institutions do not face. At a minimum, Pennsylvania should provide a premium exemption to individuals who are recipients of home and community based services.
- 2. The Health PA Demonstration Application Provides Insufficient Detail on Pennsylvania’s Health Screening Tool to Assess Medical Frailty
Pennsylvania’s Application does not provide sufficient information regarding the process and criteria that will be used to determine whether an individual is “medically frail.” The proposal still has not identified a screening tool(s) or process(es) to determine whether an individual may be “medically frail/have exceptional needs” and as such would qualify for the High Risk Plan. The reliance on responses by applicants/enrollees to questions on the application is also problematic, especially for persons with cognitive disabilities or mental illness. Some individuals, for a variety of reasons, will have difficulty with the questions or answer them inaccurately, and then be dangerously underinsured because their level of coverage will be less than their health status warrants. Others, such as those with mental health or substance abuse issues may not report problems either out of the stigma attached to their illness or condition or may be in denial. Moreover, it is not clear Pennsylvania’s approach will identify those who are “medically frail” within the definition set forth in Medicaid regulations at 42 C.F.R. §440.315(f).
We urge that as part of the approved 1115 Waiver, Pennsylvania default all persons into the High Risk Benefit Plan.
- 3. The Healthy PA Demonstration Application Does Not Adequately Address Federal Mental Health Parity Requirements
The Mental Health Parity and Addiction Equity Act of 2008 prescribes that a plan that provides both physical and behavioral health benefits cannot apply more restrictive treatment limitations to mental health and substance abuse services than it does to physical health services of the same classification. CMS urges states that use a carve-out arrangement, as Pennsylvania does, to apply principles of parity across the whole Medicaid managed care delivery system.
Pennsylvania’s Application proposes three non-emergency admissions per year for inpatient physical health hospitalization of unlimited duration, while inpatient psychiatric hospitalization and inpatient drug and alcohol services are limited to 45 days per year. The distinction between admissions and days per year does not comport with the Mental Health parity requirements. Just one physical health admission could last longer than the 45 day psychiatric limit.
We urge CMS to require Pennsylvania to apply the principles of parity across the entire Medicaid managed care delivery system to ensure that all beneficiaries’ needs are met.
We strongly urge that Pennsylvania’s 1115 Waiver Demonstration Application not be approved as submitted. CMS should require Pennsylvania to revise its Application to conform to federal law and meet the needs of all Pennsylvanians. Thank you for the opportunity to make these comments.
Ari Ne’eman President Autistic Self Advocacy Network
1 28 C.F.R. § 35.130(d). See Statement of the Department of Justice on Enforcement of the Integration Mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C., (July 6, 2011) available at http://www.ada.gov/olmstead/q&a_olmstead.htm
 See Statement of the Department of Justice on Enforcement of the Integration Mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C., (July 6, 2011) available at http://www.ada.gov/olmstead/q&a_olmstead.htm
 Fisher v. Oklahoma Health Care Authority, 335 F. 3d 1175, 1185 (10th Cir. 2003).
 The Olmstead decision extends to persons at serious risk of institutionalization and states that individuals need not wait until the harm of institutionalization or segregation occurs or is imminent. See Statement of the Department of Justice on Enforcement of the Integration Mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C., (July 6, 2011) available at http://www.ada.gov/olmstead/q&a_olmstead.htm
 This conclusion is supported by the interpretation of the appellate court in Fisher v. Oklahoma, which agreed with plaintiffs’ assertion that benefit limits which would in-turn put disabled community members at both a health disadvantage as well as a financial disadvantage compared to those in institutionalization raised an ADA issue. Fisher v. Oklahoma Health Care Authority, 335 F. 3d 1175 (10th Cir. 2003).
 Fisher v. Oklahoma Health Care Authority, 335 F. 3d 1175, 1183 (10th Cir. 2003).
 See Application of the Mental Health Parity and Addiction Equity Act to Medicaid MCOs, CHIP, and Alternative Benefit (Benchmark) Plans (CMS 1/16/2013; SHO #13-001, ACA #24)