by Norain Siddiqui
July 26th marks the 24th anniversary of the Americans with Disabilities Act (ADA), and the nation is reminded that the government has a legal obligation to provide people with disabilities the same rights and protections that are awarded to the rest of the population.
In 2012, Governor Cuomo selected to implement the Community First Choice Option (CFC) in New York State. The Center for Disability Rights (CDR) and the disability community heralded this decision because CFC is a federal initiative that incentivizes the provision of long term services and supports in the community, as opposed to nursing facilities and other institutional settings. CFC will also provide the State with enhanced federal funding called FMAP (Federal Medical Assistance Percentage) which will allow New York to generate a net revenue of approximately $350 million every year if CFC is implemented correctly.
Many disability advocates are familiar with the Supreme Court’s 1999 Olmstead vs. L.C. decision. Among the most significant court decisions to be drawn from the ADA, it rules that states must provide services and supports to individuals with disabilities in the most integrated setting possible. This means that states cannot force people with disabilities into institutions when they can successfully live in the community. People with disabilities now have the legally enforceable right to remain in their own homes with the services and supports they need.
CFC and Olmstead prioritize supporting and serving people with disabilities in their own home, and implementing CFC in New York will help the State meet its required obligations under the Olmstead decision.
However, despite the fact that it has been a decade since Olmstead became law and over two years since the State selected CFC, New Yorkers with disabilities are still not reaping the benefits of community integration. This is extremely frustrating as our people have been fighting for the civil liberty to live how and where they choose for over twenty years.
The disability community lauds Governor Cuomo’s commitment to Olmstead and his plan to implement CFC, but there are still significant barriers to community-living that New Yorkers with disabilities face daily. Thousands of individuals still live in facilities and other institution-like settings, segregated against their will simply because the services they need are not available in their own home, either due to cost, level of care, or availability of aides, etc. CFC addresses these issues, which is why it is imperative that the State not delay its implementation.
To fully execute CFC and draw down the maximum amount of federal funding, an amendment to the Nurse Practice Act (NPA) is necessary. As written, the NPA limits access to health-related tasks to persons who are considered ‘self-directing,’ or individuals that can lead and control the delivery of their own services and supports.
This clause effectively discriminates against people based on the type and severity of their disabilities because some people cannot direct their own services. As per federal CFC regulations, services and supports must be delivered “without regard to the individual’s age, type or nature of disability, severity of disability, or the form of home and community-based attendant services and supports that the individual requires to lead an independent life.” Therefore, if the State fails to enact the NPA exemption, New York’s CFC State Plan will be dismissed by the federal government.
The health- related tasks that the NPA limits access to include certain procedures, such as catheter maintenance, ventilator care, suctioning, and insulin administration. These tasks are already being successfully performed by non-licensed individuals under a different program in New York, the Consumer Directed Personal Care Program. For years, self-advocates and their families have successfully trained individuals to perform nursing tasks, even for members who are unable to direct their own services.
The proposed amendments to the NPA will provide a structure train aides to perform these tasks, requiring supervision by licensed nurses, obligatory training for the home health aides performing these tasks, and other safety guidelines. The immediate result of these proposed changes will allow nurses to assign health-related tasks to a trained aide, but they will ultimately also increase cost efficacy, patient safety, patient care quality, and consumer satisfaction all while addressing the statewide nurse shortage issue.
This legislative session, CDR and other disability rights organizations led a strong campaign to amend the NPA so that CFC can be fully implemented. After discussions with the disability community, the New York State Nurses Association issued a memorandum in support of the proposed NPA amendments. This advocacy resulted in an assembly bill (A.10137) that was introduced by Assemblywoman Glick as well as a program bill (#37) issued by Governor Cuomo. Both A.10137 and Program Bill #37 allowed for the creation of an advanced home health aide (AHHA) which would be authorized to perform health-related tasks under the appropriate supervision and training by a licensed nurse. Unfortunately, neither piece of legislation was enacted this law-making season, resulting in further delay of CFC implementation.
Summary of Governor's Program Bill #37
Section 1 - Education Law Section 6908(1)(a)(v)
- Grant NPA exemption for certain "advanced" tasks in accordance with the State Education Department and the Department of Health, including medication administration
- Determine qualification, training, competency requirements for AHHAs, taking work group recommendations into account
- State that advanced tasks may only be performed under licensed registered professional nurse
- Define AHHA as home health aides authorized to perform advanced tasks as set forth in above mentioned Education Law
- Require DOH to issue regulations regarding AHHA authorization to perform said taks, including process for revoking or limiting authority under appropriate circumstances
- Establish registry of all advanced home health aides
- Requires DOH to convene AHHA workgroup to provide guidance on tasks, types of medications, qualifications, training and education requirements, level of nurse supervision.
- Workgroup must be comprised of individuals from academia with relevant expertise, home care representatives, hospice providers, nurses, nurse educators, home health aides, pharmacists, representative of individuals who are eligible to receive services performed by AHHAs, other relevant stake holders
- Tasks that AHHA are authorized to perform
- Types of medication AHHAs are permitted to administer
- Required AHHA qualifications
- AHHA training and education standards
- Level of supervision
- Academics with relevant expertise
- Home care representatives
- Hospice providers
- Nurses and nurse educators
- Home health aides
- Invidiauls eligible to receive AHHA services and their representatives
- Other relevant stake holders
CDR and the disability community will continue to advocate for the enactment of the NPA amendments, a timely implementation of CFC, and for the overall right for people with disabilities to live in the most integrated setting possible. In the twenty-four years since the ADA was signed, the plight of people with disabilities has been illuminated but there has not been nearly enough progress in attaining equal rights. It is dependent upon dedicated advocates to secure people with disabilities their basic civil liberties, and fully implementing the Community First Choice Option will be a victorious step in that direction.
For the Governor’s Program Bill #37 Memorandum, see: click here
For the full text of the Governor’s Program Bill #37, see: click here