KEY ISSUES/TAKE ACTION
YOUR VOICE CAN MAKE A SIGNIFICANT DIFFERENCE IN THE LIVES OF PEOPLE WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
AHRC Nassau, The Arc New York and today’s service model originated 70 years ago due to the advocacy efforts of people with disabilities, their family members, friends and supporters. Share your perspectives and let lawmakers know the strong community that stands up for the issues impacting people all abilities, especially:
What’s Happening: Congress will not return until May 4. It’s important in this time for us to educate lawmakers on pressing COVID-19 disability issues. Let’s ensure the needs of people with developmental disabilities are incorporated into the next COVID-19 stimulus bill. Sign this letter to your senator and congressional representative.
What We’re Asking For: We’re calling out for $20 billion for provisions on home- and community-based services, as well as workforce support, specifically:
- Increased funding for home- and community-based services. The COVID-19 pandemic has shown that people with disabilities and older adults are most at risk when in nursing homes and congregate settings. Meaningful investments in Home and Community-Based Services (HCBS) are one of the most important steps Congress can take to safeguard the disability community. The fourth package must fund HCBS grants, such as the ones found in the To Assist Older Americans and People with Disabilities Affected by COVID-19 Act, to support the Direct Support Professional (DSP) and Home Health Workforce.
- Access to PPE for direct care workers. Direct Support Professionals (DSPs), Personal Care Attendants (PCAs), and other direct care workers are not consistently included in the definitions of “Essential Workers” who are prioritized for access to personal protective equipment (PPE). Direct care workers are on the frontlines of the COVID-19 response, assisting people with underlying conditions and disabilities with tasks such as toileting, eating, and bathing. Often these services cannot be provided from six feet away and require close personal contact. Direct care workers’ work is essential, and they must have access to the tools they need to do their job safely and for the safety of the people they serve
- Paid leave for caregivers. The paid sick days and paid leave provisions in both the Families First Coronavirus Response Act and the CARES Act did not explicitly include all caregivers who cannot work because they are caring for an adult with a disability or aging family member (whose program has closed or whose care worker or other usual source of care is sick). The paid leave provisions did not cover individuals who must isolate themselves because of their disability. Through regulatory action, the Department of Labor has expanded these definitions to include some of these circumstances, but not all. Similarly, in order to access the recovery rebates, an individual must file taxes, which excludes millions of people with disabilities relying on Supplemental Security Income and some Veterans benefits who receive no other income and therefore do not file.
*Adapted from The Arc of United States
The Issue: For a decade, New York State has under-invested in nonprofits providing comprehensive, individualized services and programs for people with intellectual and developmental disabilities (IDD). In that time, these nonprofits have received only one funding increase of 0.2%; sustained $2.6 billion funding cuts; and were denied $5 billion in funding. Nearly half of these providers have less than 40 days of cash on hand and 1 in 3 are a month away from financial insolvency.
The Position: Lawmakers must include a 3% annual increased investment to provider organizations over the next five years. This will ensure continuity of care for New Yorkers with IDD. Over 90% of services are funded by Medicaid and New York State is mandated by law to provide these services. This multi-year commitment from the state is crucial for the continuation of cost-efficient care, as well as investments in the workforce and much needed technology and facility modernization.
Toolkit for Family/Friends
Thousands of New York State citizens with intellectual and developmental disabilities are waiting for placement in a community residential setting, and many are in immediate need. The state has not provided an adequate way for families to plan for the future when providing care at home becomes difficult or impossible. People with intellectual and developmental disabilities and their families face an onerous placement process without a clear understanding of that process or the extent of their wait.
However, while thousands await suitable placements, many residential vacancies go unfilled. Vacancies within certified residential settings have grown in recent years because of an administrative requirement to fill the opening with someone from the “Emergency Need” placement category. Often, the care needs and behaviors of these individuals are incompatible with the home in which the vacancy exists. In these cases, the vacancy remains unfilled, despite the fact it may be a suitable placement for individuals from the Current Need or Substantial Need categories.
Offering housing almost solely on an emergency basis, makes it impossible to guarantee placements will be found in the most appropriate, least restrictive home environment. These restrictions also lessen the individual’s opportunity for choice in their own housing.
We are working with OPWDD to improve the flexibility and timeliness of the placement process, to more expeditiously place individuals into available vacancies that are compatible with their needs. The Arc New York will also continue to collaborate with Keep the Promise Family Coalition to advocate for solutions.
We continue to advocate for increased residential development, and an improved placement process, especially for people living at home with aging caregivers. We propose the following actions be taken to ensure there is sufficient residential development to meet the growing need:
-transparently assess the number of people who have requested or need residential services and keep a wait list with a publicly available summary;
-streamline the eligibility process so that people on the wait list can have their eligibility rapidly assessed and established;
-make administrative enhancements necessary to more efficiently match people seeking placement with existing vacancies;
-match and place individuals in already existing residential settings which can meet their individualized needs; and
-provide capital and operating funds to establish as many new residential opportunities as necessary to meet the needs of New Yorkers with intellectual and developmental disabilities, particularly for those individuals with behavioral and psychological needs.
Even though many people with intellectual and developmental disabilities want to work and have the skills to do so, there are limited employment opportunities available to them. As a result, the majority of adults with intellectual and developmental disabilities are either unemployed or underemployed.
The Arc New York recently initiated the Customized Job Programs legislation A.1415 (Santabarbara)/ S.6626 (Skoufis). This bill would establish a pilot program that subdivides state jobs into simpler component parts to provide opportunities for minimum-wage, integrated employment for people who could effectively perform some, but not all aspects of a job.
The Arc New York supports increased employment opportunities for people with intellectual and developmental disabilities, and will work to:
-enhance employer tax credits for hiring people with disabilities;
-secure additional funding for job coaches and other supports;
-create new state job opportunities for people with intellectual and developmental disabilities;
-pay a subminimum wage when appropriate;
-pass the Customized Job Programs legislation; and
-continue to transform sheltered workshops into integrated businesses where appropriate.