Utica, NY - January 7, 2016 - Standing at United Cerebral Palsy in Utica, NY, U.S. Senator Charles E. Schumer today called on Congress to pass the Disability Integration Act. Schumer explained that this new legislation will help individuals with disabilities live more independently by providing necessary at-home and community-based services and supports. Specifically, the legislation ensures that any individual who is found eligible for institutional care must also be given the option to receive the same necessary services and supports at home, or in a setting of their choosing, that would have otherwise been provided in an institutional setting. Schumer explained that the legislation gives individuals with disabilities the option to live more independently, and in the comfort of their own home, rather than in an institutional facility away from their friends and family. Moreover, Schumer said that this legislation will help ease the financial burden of those who do not want to live in a facility and may be paying high out-of-pocket insurance costs for in-home services and supports. Schumer also went on to say that the bill will help alleviate the emotional burden that family members are often faced with when taking care of their loved ones with disabilities who are not receiving the necessary services and supports. Schumer, the sponsor and author of this bill, said Congress should do promptly pass this bill, as it will help promote independent living among Americans with disabilities.
“Individuals with disabilities have the right to live independent, fulfilling lives amongst their families and friends – but right now, they are often denied the kind of at-home services and supports that then keep them in institutional settings, far from their loved ones and communities. We need to be doing everything in our power to make sure they have the resources needed to live and thrive in the comfort of their own homes,” said Schumer. “This legislation will finally give individuals with disabilities the option to receive these types of services at home, so that they can continue living life to the fullest in their own communities.”
The Disability Integration Act ensures that any individual with a disability who is found eligible for institutional care must be given the option to receive the necessary services that allow them to be more independent. If passed, this legislation would prohibit public entities and insurance providers that pay for long-term services and supports (LTSS) from using waiting lists, screening people out, capping services, under-paying workers for services or taking any other actions that would restrict the home- and community-based services provided to people with disabilities. The Disability Integration Act specifically defines LTSS as the assistance provided to individuals with disabilities in accomplishing, acquiring the means or ability to accomplish, maintaining, or enhancing activities of daily living, instrumental activities of daily living, health-related tasks or other related functions, tasks or activities. For example, LTSS programs might include help with eating, bathing, dressing, preparing food, managing medication and housekeeping.
In addition, Schumer explained that this is an incentive-based system. States, or public entities in the state, that comply with the objectives outlined in this bill within a certain time frame could see an increase in their federal medical assistance percentage (FMAP) rate. The FMAP rate determines the federal government’s share of Medicaid expenditures for a state. Full compliance with this bill would result in a five percent increase in FMAP for the state.
Schumer said this legislation could drastically improve the lives of those who receive services at facilities like the United Cerebral Palsy in Utica. Upstate Cerebral Palsy in Utica provides programs and services to thousands of children and adults who are physically and developmentally challenged, as well as their families. The agency supports children and adults with disabilities and their families through hundreds of daily programs and services. Upstate Cerebral Palsy is one of 8 affiliate agencies under the new parent corporation of Upstate Caring Partners, formed to create collaboration among providers. The affiliates of newly formed Upstate Caring Partners parent corporation include Upstate Cerebral Palsy, the Kelberman Center, Cerebral Palsy Association, Mohawk Valley Handicapped Services, The E. John Gavras Center, Central New York Health Home Network, Care Management of Central New York and The Root Farm. The Upstate Caring Partners agency affiliates have a geographical reach from Auburn to Lowville, Little Falls to Watertown encompasses all of Central New York and beyond with 84 locations, over 1,700 employees and affiliate budgets exceeding $100 million in 2016.
Upstate Cerebral Palsy, which is already taking the lead on initiatives that Schumer’s bill aims to address, prides itself on treating every child and adult who comes through its doors as an individual with unique needs, interests, preferences and opinions. Schumer said Upstate Cerebral Palsy is a prime example of an agency that offers choice and transition services to people with disabilities that all people should be able to take advantage of. The center’s new Self Direction program allows individuals and their families to plan and access services designed to meet their individualized needs. The program offers the family or individual the ability to control a personal budget as well as the ability to hire, schedule, and supervise the people who support him or her. The individual is empowered to choose the mix of supports and services, how and when they are provided, and choose the staff that provides them – something that should be a basic right for everyone. Self-Direction allows individuals and their families the ability to plan, develop and design services and supports that are customized to each person’s individual needs.
Schumer said the agency self-direction initiative is a wonderful example of how basic civil rights for individuals with disabilities are upheld and fostered at Upstate Cerebral Palsy – an agency committed to the belief that everyone deserves the opportunity to live to their fullest potential. During his visit, Schumer was joined by Upstate Cerebral Palsy President Lou Tehan, Vice President Kathy Hartnett, and United Cerebral Palsy staff, students and clients.
Schumer’s legislation is modeled on the principles embodied by the Americans with Disabilities Act (ADA) in order to ensure and encourage independence of disabled individuals and seniors. The ADA was signed in 1990 to ensure people with disabilities are integrated into society. The Disability Integration Act strengthens the ADA's integration mandate to ensure that “No public entity or LTSS insurance provider shall deny an individual with an LTSS disability who is eligible for institutional placement, or otherwise discriminate against that individual in the provision of, community-based long-term services and supports that enable the individual to live in the community and lead an independent life.” Previous legislative approaches have mainly focused on the services provided by Medicaid, which is the primary payer for LTSS. Therefore, Schumer said that more must be done to protect those who want to live independently in their community.
Schumer said that his Disability Integration Act addresses a long-standing civil rights problem: individuals living with disabilities are frequently denied the freedom to live independent lives in their own communities, often among family and friends. The proposed legislation would help provide necessary services and supports without requiring institutional care. Schumer said this is particularly important when considering the cost of institutional care facilities. For example, in the United States the median cost of living in a nursing facility is over $91,000 per person per year.
The Disability Integration Act would require the Department of Health and Human Services (HHS) to issue regulations to clarify specifics on eligibility and minimum requirements for coverage of services and supports with which providers will need to comply. Public entities and LTSS insurance providers would be required to conduct evaluations of their current practices and policies within six months of the release of these new regulations to describe current gaps in their systems and to address how they will adapt their policies and practices to comply accordingly. Public entities would be required to present transition plans within one year after completing the evaluation to prove that they have created and begun implementation of a plan that makes the adjustments they deemed necessary in their self-evaluation.
According to ADAPT, an organization that supports disability rights, a 2010 Harris poll showed 89 percent of all Americans, and 94 percent of retirees, support legislation which would require people to get home and community-based supports and services instead of forcing older and disabled Americans into nursing facilities and other institutions. Schumer’s legislation has the support of many organizations including: ADAPT, the National Council on Independent Living, The Autistic Self Advocacy Network, Association of Programs for Rural Independent Living, Association of University Centers on Disabilities , Autistic Self Advocacy Network, Disability Rights Education and Defense Fund, Medicare Rights Center, National Council on Independent Living, Not Dead Yet, National Organization of Nurses with Disabilities, Paraprofessional Healthcare Institute, SEIU, American Association of People with Disabilities, Little People of America, National Coalition for Mental Health Recovery, National Disability Leadership Alliance, and the United Spinal Association.