STATEN ISLAND, N.Y. -- While others are enjoying retirement or leisure time with family and vacations, there are hundreds in their senior years who face daunting challenges every hour of every day.
Many are parents who are the primary caretakers of children with intellectual or developmental disabilities.
"So much for the 'golden years' at 82 and 79 years old," said Donna Long, executive director of the G.R.A.C.E Foundation, regarding parents who are taking care of their 53-year-old daughter with I/DD.
The daughter recently broke her hip. Unable to bathe and assist her in the bathroom any longer, the parents made the difficult decision of leaving their daughter in Eger Healthcare & Rehab Center after her surgery.
They could no longer wait for residential placement.
Some have children who are in their 30s or 40s themselves and require care 24 hours a day, 7 days a week because there is a lack of available housing with around-the-clock care here and across the city.
Individuals are often placed on waiting lists, based on priority set by the state, for years before they are placed in residential housing.
These families are often faced with relying on only emotionally difficult alternatives -- placing their loved ones in nursing homes or psychiatric facilities, which severely impacts their quality of life, because they can no longer get the level of care that they need. Parents, or other aging family members, are no longer able to provide it.
There are about 450 New Yorker with I/DD who are in emergency need of a place to live -- they are considered priority 1 by the state, and some have been waiting for more than a year.
A PLEA FOR HELP
For nearly 50 years, the Staten Island Developmental Disabilities Council (SIDDC) has been informing, serving and advocating for the intellectually and developmentally disabled (I/DD) community on Staten Island. The number of those in need of help continues to grow each year, while funding and available resources continue to decline.
Advocates held a rally in January. They visited the offices of State Sen. Andrew Lanza (R-Staten Island), Assemblywoman Nicole Malliotakis (R-Staten Island/Brooklyn), State Sen. Diane Savino (D-North Shore/Brooklyn), Assemblyman Matthew Titone (D-North Shore) and Assemblyman Michael Cusick's (D-Mid-Island) offices, as well as the Staten Island Advance, asking all to put pressure on Gov. Andrew Cuomo for increased funding and services.
"The governor seems to have forgotten that at one point we [New York] were the beacon for services and support to people with intellectual and developmental disabilities," Michael Weinberg, SIDDC chairman, said during the annual SIDDC community breakfast.
The major area of concern for the SIDDC and the community at large is the increased need for residential housing, programs and services for those who are either too young or too old to be eligible for the wide range or mandated services provided by various state and city agencies, like the Department of Education.
"Our numbers are growing, even our little kids. After-school programs, recreational programs, housing, education and early intervention programs. They're cutting everything or they're not growing them fast enough to keep up with the need," said Diane Peruggia, who sits on the executive board of the SIDDC and has a daughter with autism.
SALARY INCREASE
The SIDDC also has a serious issue with the state's minimum-wage increase because it does not apply to Direct Service Professionals (DSPs), who are essential caregivers for individuals with intellectual and developmental disabilities, helping them with essential life skills like bathing, shopping, eating, and other day-to-day routines.
DSP salaries are set by the state, because the organizations that employ them - usually nonprofits - are largely funded through Medicaid programs.
Advocates have pleaded for Cuomo to increase the wage reimbursement and state funding, but the issue has yet to be addressed.
"In the billions of dollars the governor proposed to be spent in an hour-long address in more than 25 pages and over 12,000 words, we are not mentioned once," Weinberg said in reference to Cuomo's State of the State address earlier this year.
Cuomo would also need to increase the Medicaid payments that provide nearly all of the revenue for many non-profit agencies for individuals with disabilities.
Low salaries force many of the workers to find other, better-paying jobs -- with the Department of Education, for example -- making it harder for the non-profits to employ enough workers to serve their growing number of clients.
"He needs to include the funding for our staff, just as he has for the state, because it is only fair, and it is only right. If the Governor fails to do this, if the legislature fails to cover the cost of this wage increase, service providers anticipate a $1.7-billion dollar loss," Weinberg said.
"Supports and services will be impacted, eliminated in some cases, and there will be lay-offs of full time personnel to off-set the wage increase," he explained.
From the left, Alexa Peruggia, Brianna Gaglia, Allie Brunetti and Alexa DeAngelis pictured at the Seton Foundation for Learning bennefit "Island Fashions" in October 2015 at the Old Bermuda Inn. (Staten Island Advance/ Bill Lyons)
PROGRAMMING
The SIDDC is also asking for funding for more programs, including special needs schools and preschools and Head Start centers.
Many education programs and early-intervention centers have been forced to close or do not have enough seats to properly serve the I/DD community on Staten Island, creating yet another lengthy wait list for clients in need.
Peruggia, of the SIDDC who also is active with Community Board 3, said that Lanza had pledged his support and promised to put pressure on Cuomo to allocate funding for housing and programming.
She added she is worried about her 21-year-old daughter, Alexa, who is autistic and aging out of high school, and the lack of programs available for her when she finishes.
"We're just scared parents and family members," Peruggia said.