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Personal Narratives Across New York State

In tandem with the DSP wage funding increase campaign, the statewide Collaborative is collecting stories from across New York State.  These family and individual stories underscore the importance of a proposed permanent wage increase for Direct Support Professionals, as well as accepting Governor Hochul’s proposed 5.4% COLA increase.  The stories are personal narratives that describe how the lack of adequate funding for the wages of DSPs in the non-profit service provider budgets have severely negatively impacted the lives of individuals with IDD, their families, and the support staff that cares for them.

Western New York

Craig lives with friends in a Self-Directed, semi-independent, living situation in Amherst, 25 miles from us. Aspire of WNY manages the staff and families approved the hiring. With the pandemic we lost 3 staff, and recently our full-time staff. We have coverage problems. Since this is not a certified home, parents can provide coverage. While spending time with Craig and the other young men is enjoyable, it is not what we wanted for Craig. We need to be able to pay Direct Support Professionals above the minimum wage so we can retain and attract competent, caring, and well compensated individuals to be there for our loved ones. There needs to be a long-term solution as we are getting older and want a bright future for Craig.

Since the age of 14, Kevin has received support from DSPs, whether through respite, family support, or through his current placement in a group home. He has been attending Community Habilitation for 13 years. Kevin is non-verbal, but he has been able to live a meaningful life because of DSPs. He has spent 50-75% of life with a DSP at his side and has greatly benefited from these relationships. He is a happy person, and his family is grateful for the many DSPs he has worked with over the years. As Kevin's parents grow older, they want to ensure that he continues to have the DSP support he needs.

They worry that without higher wages for DSPs, their son's situation will be less secure, and his health and safety could be jeopardy. 

They worry that without higher wages for DSPs, their son's situation will be less secure, and his health and safety could be jeopardy. They know many other families who have lost opportunities for their children because of the DSP shortage, and they are concerned that the lack of proper compensation for DSPs will only continue to further the crisis. 

Suffolk County

My grandson recently required Crisis Housing in November and received Respite during this last school break. As his primary, I had concerns that I was handing him over to staff that were vetted, but not necessarily “experienced” due to the high turnover and low salaries. It would really lower my anxiety if I knew I was entrusting my minor or young adult into the hands of staff that were more experienced to better support him and his needs. I’m a retired RN and have worked in the profession for 36 years and understand that a talented workforce requires the appropriate compensation to retain qualified support staff. So please increase the salaries of DSP’s so that “good” staff will stay and not need to go get a second job to make ends meet.

North Country

Heather, DSP through ARC Self Direction- Works with one of the teens on my caseload who has incredible amounts of anxiety and has trouble separating from his mom. He used to dread staff coming to work with him & would literally make himself sick, so he didn't have to go. With Heather now, he is ready before she even shows up to get him. She has brought him to new places in the community, introduced him to new hobbies like pool & darts, and even has him interested in other things that he hasn't tried yet. Prior to Heather working with him, he had panic attacks several times a week. He had one last week for the first time in about 6 months, and she was able to help him through it and he did amazing!

Southern Tier

Our involvement with services began a few years ago. Abby lives home and with my work schedule she is alone for much of the day. Our community hab services have been a bright light in her work with some wonderful DSP's. I refer to more than one as unfortunately we lost a few DSPs.

We have lost absolute wonderful people who made amazing impacts on Abby and her quality of life.

The current state of pay is far too low for the care, effort, and personal commitment these people provide to their clients. We have lost absolute wonderful people who made amazing impacts on Abby and her quality of life. They are not folks who simply do a job, but they build a relationship of trust and understanding with the clients that is not simply helpful but, uplifting Abby’s spirit and life. The pay, or rather lack thereof, caused our last DSP to transition to other employment and has left us with a part time individual who while very good and kind cannot do enough hours to fully meet the approved hours of service and we are only receiving about half of what Abby is approved for. The DSP provides Abby opportunities to gain access to the community, meet people, develop relationships, and attend to some of her needs such as shopping, picking up prescriptions, and other personal appointments.

Central New York

My daughter requires full-time, 24/7 care for both intellectual and developmental needs, and significant medical needs. We have not had consistent direct care support for her non-medical needs for the past 2 years.

We have not had consistent direct care support for her non-medical needs for the past two years.

The pay rate of $15-$18 per hour is not enough to engage and hire consistent workers. We have from our personal network for many years but that has decreased significantly due to life changes (young adult kids and their circles of friends are often sources for DSP work; they know the family so will work for a year or two in a part time capacity; then they finish college or move away and the circle shrinks). Today, we rely on ads, Facebook groups and other general sources as a recruiting source for DSPs. There just aren't enough people available who are able to work as a DSP at the low hourly pay.

New York City

David is autistic with intellectual disability and has been receiving OPWDD supports over 30 years. He lives in a group home and was participating in a pre-vocational program in a Dayhab where he was making steady progress toward transitioning to an employment program. Due the staffing emergency, David never goes out into the community either with his house or day program. His day program has such low occupancy that he must travel 2 hours each way. He has become increasingly frustrated, anxious, and depressed and just keeps saying, "I want to go out."

A Lifeline for New Yorkers With Intellectual and/or Developmental Disabilities

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