Entitled to litigate at your discretion

Rights vs Reality. 

Disability services feel so unpredictable for adults because public education is an entitlement, and adults services are not. 

An entitlement means if a person meets the eligibility criteria, the government has a legal obligation to fund the benefit or service. Social Security retirement and Medicare for eligible beneficiaries are also examples of entitlements. Many adults with disabilities are entitled to income or health insurance benefits if they meet eligibility requirements. But access to the services needed to live, work and participate in the community is often a different matter. Most adult disability services in the United State are discretionary. That means each state decides who qualifies, how many people they can serve, and the amount of funds to appropriate each year. 

 In MA, once a person with disabilities graduates with a diploma or turns 22 there are no guaranteed services available. Any services, such as through DDS or MassAbility have eligibility criteria, must be requested, and are considered discretionary. The absence of an entitlement means the burden of the work gets distributed differently. This falls on families, and adversely disadvantages individuals without family advocacy. 

 Massachusetts advocates have built a patchwork of protections, that help fill some of the gaps created by the lack of guaranteed adult services: 

• Chapter 688 “Turning 22” program Because of pressure from advocates and families, the Massachusetts Legislature funds the “Turning 22” transition class each cycle. It behaves like a functional entitlement for young adults. 
• Medicaid Waivers Massachusetts maximizes the use of Home and Community Based Services (HCBS) federal Medicaid waivers. The federal government will match about 50% of the cost. Advocates use this financial reality as leverage to convince the state to invest tax dollars into DDS up front and “claw back” hundreds of millions in federal matching funds. 
• ARICA (Autism Risk Insurance Coverage Act) Mandating private health insurance to fund autism therapies removes costs from the state. 
• The Autism Omnibus Act. Expanded the actual legal definition of who DDS is allowed to serve. 
• Nicky’s Law: A state registry to ban abusive workers from working in the system. 

In California, the Lanterman Act makes disability services an entitlement. This means more people have access to funding and services. In reality, because of low wages and workforce shortages, there is a shadow waiting list. It can take years to find direct care workers. 

Having an entitlement isn’t a guarantee of anything except a legal right. When needs aren’t being met, families and individuals have to use lawyers and litigation. California relies on the courts and legal mandates to protect this population of disabled adults. 

Massachusetts relies on political leverage and high median wages and health insurance coverage rates. In either state, millions of dollars that should go to serving people are tied up in political or legal battles. 

In the United States, disability services and benefits are seen as a welfare benefit to be administered and monitored for a fragmented population. When services are treated as welfare, access becomes something to fight for. The focus is on documentation, authorization and rules. 

Disability benefits and services should be considered  social infrastructure necessary for people to participate in society. We should track long term costs and social outcomes. 

Whether guaranteed by law or funded through annual budgets, having enough trained people willing to do the work is essential. A legal right to services does no good when providers can’t hire staff. When wages are too low to sustain the direct care professional workforce, the people who fill the gap are usually family members. For people who don’t have family members who can advocate, provide care, or absorb the financial and emotional cost, the consequences can lead to negative life experiences and increased forms of crisis interventions. 

When crisis intervention becomes the default plan, we’ve created an invisible architecture of containment. 

I call this reality shadow institutionalization.