Just when you thought the state’s policies could not get less popular or be more harmful, New Jersey is cutting Medicaid benefits for adults with disabilities on July 1. Changes to Division of Developmental Disabilities (DDD) benefits will slash funding for critical services that people need to live independently.
These changes, known as fee-for-service (FFS), will stop reimbursing service providers for their full client costs and instead only pay for staff time spent in face-to-face client meetings. Unfortunately, some vital work occurs outside of these direct interactions. Staff will no longer be able to invest time identifying the best options for their clients, confer with professional colleagues on best alternatives to serious challenges, and meet regularly to monitor and ensure quality service. FFS will also reduce benefits for essentials such as rent, medications, and food.
Why are these changes bad policy? They are unnecessarily cruel and do not ultimately save tax dollars.
Take Emily. She has developmental disabilities. She is in her 50s and has made South Orange her home and worked for a large corporation for almost 30 years. She is the main breadwinner for her and her husband. She is a taxpayer, is active in the community, and patronizes restaurants and other local businesses. She stays healthy by participating in Special Olympics activities. She follows politics and votes.
To build this independent life, Emily (name changed for privacy) worked with the dedicated staff of JESPY House. For close to 40 years, this South Orange-based nonprofit has helped clients live independently. JESPY hires highly skilled staff who work with clients to develop daily living skills, provide work readiness and employment engagement supports, give clinical and behavioral support, offer health, cultural and recreational activities, and more.
Emily is one of 250 clients. As executive director of JESPY House, I have witnessed our clients grow. I see more joy. I see an increase in self-worth, confidence, and pride. I see how they embrace independence. Many faced incredible challenges to get to where they are today. JESPY provides a supportive community in South Orange. Clients have found their niche. This is home.
Michael, a JESPY client, has a great analogy. He says, “JESPY clients are like X-Men. We all have different powers or skills. JESPY House works with us to identify and develop them. We focus more on our special abilities (powers) than our disabilities. This helps us lead productive and fulfilling lives.”
Adults with disabilities are often overlooked. Our society thinks about people with disabilities when they’re children or seniors. What about their lives in between? Why don’t we discuss the importance of their independence?
Independence is not just a right; it’s smart policy. JESPY House clients work or volunteer. They are hair stylists, musicians, caterers, office staff, marketing assistants, carpenters, and more. Many earn salaries and pay taxes. Others volunteer and support a range of nonprofits including senior and day care centers.
Clients also engage with the greater community. They contribute over $3 million dollars to the economy of South Orange each year. For example, they pay $2.1 million in annual rent to local landlords, $700,000 annually for groceries, household items, medications, and sundries. JESPY clients spend over $275,000 annually on meals at local restaurant, ice cream parlors, coffee shops, and entertainment and leisure actives.
South Orange Village president Sheena Collum understands how important JESPY House is for the community: “Municipalities often struggle to drive customers to their downtowns. JESPY residents definitely boost sales in our downtown businesses. Most JESPY residents don’t drive and shop in our Village. They go to our shops, movie theatre, and performing arts center. More importantly, JESPY residents are part of what makes South Orange a diverse and welcoming community!”
JESPY House primarily supports higher functioning adults, who need fewer resources. It costs less to provide services leading to independence than to silo or isolate individuals. Yet, DDD will reduce reimbursement rates even more for higher functioning adults. This penalizes JESPY House whose DDD reimbursements will be cut in half. Other organizations serve clients with greater disabilities and receive higher reimbursement rates to offset these reductions.
Forty percent of JESPY House clients rely on DDD benefits. What happens if DDD changes force many to leave JESPY House?
Clients vividly remember their lives before JESPY House. Some watched television or sat around home all day without purpose. Others lived in group homes that were more restrictive. Such conditions increase emotional and physical health problems for higher functioning adults with developmental disabilities. Healthcare costs are more expensive for states than the costs associated with providing independence.
For Emily, these changes will greatly increase her costs, force her to leave JESPY House, move far away, and lose her job. We cannot allow this to happen!
JESPY clients are advocating for their rights and mobilizing allies to support them. We have met with federal and state legislators to push back against pending changes. As New Jersey legislators debate the budget this week, they should identify ways to counter the state’s cruel and ineffective policies and to invest in essential and unique organizations such as JESPY House.
We have built a wonderful community and will fight against having it undermined. The vibrancy of our community is a critical element in our advancing independence for people with developmental disabilities.