We Choose Community!
Why ADAPT is in Harrisburg Pennsylvania
Due to the advocacy of Pennsylvania ADAPT and the broader disability community, Pennsylvania was in the process of "rebalancing" its system to more effectively support seniors and people with disabilities living in the community rather than relying on institutional placement. The state had also become a national leader in allowing people with disabilities to manage their own assistance and utilizing Centers for Independent Living in the provision of home and community based services. The Corbett administration has destroyed much of this progress by cutting funding for Pennsylvania's Medicaid home and community based services and implementing sweeping changes to the state's infrastructure for providing home and community based long term services and supports.
Pennsylvania's Medicaid program is at a crossroads. The state can continue to implement arbitrary cuts and system changes that devastate Medicaid-funded programs or can it can implement Real Medicaid reform which contains spending while promoting the independence and freedom of people with disabilities.
ADAPT believes the choice should be clear because the US Supreme Court has determined, in the Olmstead decision, that under the Americans with Disabilities Act people with disabilities have a fundamental civil right to receive community based services and supports from Medicaid as an alternative to being forced into a nursing facility or institution. Furthermore, there is federal funding to make these important changes.
ADAPT demands that Governor Corbett's administration develop an Olmstead plan which:
1. Engages ADAPT, the state's extensive network of Centers for Independent Living, other disability-led advocacy organizations and legal advocates in the development and monitoring of the plan and its individual components;
The disability community in Pennsylvania has extensive expertise in the development and provision of home and community based services for people with disabilities. In fact, ADAPT members from Pennsylvania were key advocates in the development of the Community First Choice Option and worked to secure other rebalancing initiatives in the Affordable Care Act. Rather than utilize this expertise, the Corbett administration has excluded, attacked, and undercut these advocates.
Aside from the expertise the disability community has to offer, the decisions that are being made directly affect our lives. We demand that we be fully involved in the process used to make such decisions. Governor Corbett must understand that there should be NOTHING ABOUT US WITHOUT US!
2. Shifts Medicaid funding for long term services and supports so that at least fifty percent of those funds support home and community-based services by 2015;
Even though seniors and people with disabilities would much rather live in the community and those services are much more cost-effective, the bulk of Pennsylvania funding for Medicaid long term services and supports goes toward institutional placement. In fact, over the past five years, only 15.7% of Medicaid funding supported home and community based services for seniors and people with (non-developmental) disabilities while 84.3% of that funding went to nursing facilities.
Federal funding is available to change this! According to SEIU, Pennsylvania is eligible for approximately $65 million a year in Balancing Incentive Program funds. To receive these funds, the state would need to implement some structural changes that include a no wrong door system for accessing services, conflict-free case management services, and a standardized assessment process.
3. Selects and implements the Community First Choice Option;
The Community First Choice (CFC) Option is a new federal Medicaid program, established as part of the Affordable Care Act, which assures that any person who is eligible for institutional placement would have the opportunity to receive services and supports in the community. This option would eliminate the waiting lists for home and community-based services and provide people with disabilities with increased opportunities for control over their services. Not only would CFC improve the lives of people with disabilities, the state would receive approximately $120 million a year in additional federal Medicaid funding. Under CFC, services would be provided based on functional need rather than diagnosis, allowing the state to achieve additional savings through the consolidation of redundant state bureaucracies.
4. Establishes specific benchmarks and regularly provides public reporting on the state's progress in achieving these benchmarks;
In order to effectively rebalance the state's Medicaid program, the Corbett administration must work with advocates to establish specific benchmarks, including annual objectives that identify the number of people and amount of funding that shift from nursing facilities and institutions to home and community-based services. ADAPT has developed a document that can serve as the basis for developing both the plan and the individual benchmarks. In addition to these benchmarks, ADAPT demands that the Corbett administration develop a system to track denials of community services to identify trends for future systemic reforms. To assure transparency in these efforts, the state must regularly and publicly report on its progress in meeting these benchmarks. This data must be publicly available by facility, county, and region.
5. Assures that people with the most significant disabilities receive the services and supports they need to lead an independent and integrated life in the community;
People with significant disabilities are most at risk of being institutionalized because they cannot get needed community-based long term services and supports.
Recent changes have increased the likelihood that these individuals will be forced into unwanted and illegal institutionalization. For example, recently Pennsylvania has implemented a system for reviewing "high cost" individuals which seeks to identify how to reduce services and may now determine that an individual shouldn't receive services and supports in the community.
This is an outrageous attack on the civil right of people with disabilities to live in the community (most integrated setting) as established by the US Supreme Court in the Olmstead decision. Additionally, the state should prioritize funding for the Act 150 Attendant Care Program, a state-funded program for those people over the Medicaid income limits which provides community-based, long term services and supports. Because the people served by this program become Medicaid eligible as soon as they enter an institution, the state saves millions of dollars by keeping these individuals in community settings.
6. Changes state rules to allow attendants to perform health maintenance tasks for people who need them as a long term service or support so that individuals who need this assistance can live independently in the community;
The PA Nurse Practices Act limits who can be paid to perform certain health maintenance tasks. Although health maintenance tasks were originally short-term acute care tasks often performed in a medical setting, they have become part of daily life for many people with significant disabilities. Requiring a trained nurse to perform these activities creates unnecessary state costs and a loss of freedom of choice to the individual. For example, a person using a permanent feeding tube cannot permit their attendant to assist them. Instead, the state must pay for a nurse. Consequently, there is a great reluctance to allow people with feeding tubes to be served in the community.
This law must be amended to recognize how these tasks have become a part of the long term services and supports an individual may need to live in the community and allow attendants perform health maintenance tasks as routine activities for people with disabilities who are living in the community. Pennsylvania ADAPT has identified a number of different approaches for addressing this problem which would assure that people who need such assistance can lead independent lives while helping the state avoid unnecessary Medicaid spending.
7. Leverages the state's network of Centers for Independent Living and other non-profit disability-led providers committed to the independence and integration of people with disabilities;
Pennsylvanians with disabilities have a network of 18 Centers for Independent Living (CILs) owned and operated by people with disabilities in their local communities. CILs have worked over twenty years collaboratively with the Ridge and Rendell administrations. Together, they have built a consumer-focused, community-based system for long term services and supports. These mission-driven non-profits have traditionally employed people with disabilities, taught independent living skills, and actively provided community services under approved Medicaid care plans to enable individuals to live independently in the community. Many of the people who manage and staff CILs have lived in institutional settings themselves, and therefore, seek out individuals that other service providers actively avoid.
The Corbett administration has systematically dismantled Pennsylvania's network of Centers for Independent Living who have been the bedrock of the state's system for supporting people with disabilities living independently in the community. The administration has shifted funding from these disability-led, non-profit organizations to out-of-state for-profit organizations that are not connected to our local communities and networks of support. This drastic plan has disrupted the lives of Consumer-Employers who managed their own attendant services with supports from these local organizations. Instead of working with these local mission-driven organizations creatively making the accommodations people need to be successful,Pennsylvanians with disabilities are now being forced to deal with a rigid out-of-state faceless bureaucracy that is driven by profit. These changes have also resulted in attendants going without paychecks while hundreds local people - including people with disabilities - lost their jobs so Pennsylvania tax dollars can be sent out-of-state.
8. Establishes Medicaid rates that support a living wage for attendants and sustains thecommunity-based organizations that assist people in living independently;
Rate cuts have made some programs providing long term services and supports unsustainableand have resulted in reductions in the wages that are paid to attendants. In the final budget, the State restored funding for reductions in nursing facility rates, but left the cuts to communitybased services intact. This reinforces the institutional bias and undercuts the system that provides home and community based services, taking the state backwards in its effort to rebalance its system for Medicaid long term services and supports.
9. Restores the funding systems that local counties use to support mental health and developmental disability programs;
Although block grants are promoted because they allow "flexibility" they also create significant variability between counties, provide little to no accountability, and become an easy way to cut services. The Corbett administration is piloting county block grants for mental health and developmental disability services and supports. This approach has resulted in a system that leaves people with disabilities unprotected and creates a politically-based cash grab at the county level.
10. Establishes leadership within the state who truly supports home and community based services as an alternative to institutionalization.
Pennsylvania needs leadership at the highest levels of the Corbett administration in the Department of Public Welfare (DPW) who are committed to the provision of community based services as an alternative to institutionalization and committed to implementing the civil rights provisions of the US Supreme Court's Olmstead decision.
Secretary Alexander has failed to provide such leadership and refused to engage people with disabilities in the development of critical polices that affect us. Beyond that, the Secretary has failed to take advantage of millions of federal dollars in rebalancing funding. Pennsylvania needs leadership at DPW that is committed to Real Medicaid reform that supports the civil rights of people with disabilities and leverages these untapped resources. ADAPT and the disability community must be represented on the team making the selection of the individual who provides this leadership.