A few years ago, my state decided to implement a new method for calculating how many home nursing care hours children who are medically complex should receive. Instead of allowing a physician to determine the number of hours needed, the state hired a corporation to assess and score children. The number of hours children received was based entirely on the results of a mathematical scoring tool and algorithm. As a result of this new method, more than 90% of children in one program had their nursing hours cut, and in most cases eliminated.
Obviously, this situation was a backhanded approach engineered to cut kids off from expensive private duty nursing, one that likely violated several civil rights and Medicaid laws. It was time to advocate.
Advocacy can take many forms. Sometimes a splashy media campaign or a few phone calls to well-placed politicians can make all the difference. But in some cases, especially ones as egregious as this one, it is critical to use another tool: a disability rights lawsuit.
Disability Rights Lawyers in Every State
Every state is required to have one or more Protection and Advocacy organizations for people with disabilities. These organizations are particularly challenged with protecting the rights of people with disabilities. They have the legal right to both advocate for and represent individuals and classes of people with disabilities.
The Protection and Advocacy system began back in the 1970s to help target egregious conditions, abuse, and neglect in institutions for people with developmental disabilities. It has since expanded to eight separate components:
- PADD (Protection and Advocacy for Individuals with Developmental Disabilities)
- CAP (Client Assistance Program)
- PAIMI (Protection and Advocacy for Individuals with Mental Illness)
- PAIR (Protection and Advocacy for Individual Rights)
- PAAT (Protection and Advocacy for Assistive Technology)
- PABSS (Protection and Advocacy for Beneficiaries of Social Security)
- PATBI (Protection and Advocacy for Individuals with Traumatic Brain Injury)
- PAVA (Protection and Advocacy for Voting Accessibility)
These eight programs cover virtually all aspects of disability rights law, and each state is required to have one or more organizations that provide all eight services. As of 2017, these are the current organizations in each state providing these services.
In addition to Protection and Advocacy organizations, states may have other private groups that assist in this type of legal advocacy. These may include private lawyers, medical-legal partnerships, and other organizations. Medical-legal partnerships have been particularly helpful in many states to ensure children receive the appropriate medical care from Medicaid.
Finally, the national organization National Health Law Program provides information and resources for disability rights and other health-related lawsuits nationwide.
Using Disability Rights Lawsuits for Advocacy
When families encounter a situation like the one in my state, where they were suddenly cut off from a critical program, they often feel powerless. They may not even know they have a right to appeal. Most families in this situation do not think about disability rights lawsuits because they expect lawyers to be extremely expensive.
In individual cases, Protection and Advocacy organizations, as well as medical-legal partnerships, will try to the best of their ability to take cases pro bono, which means for free, or refer to a lawyer willing to work pro bono. Unfortunately, they cannot take all individual cases for free.
However, in situations like the one in my state where hundreds of children were affected, disability rights lawyers are usually very willing to develop a class action lawsuit representing the needs of the larger group of children. This is because of the way legal fees in civil rights cases are handled. If the civil rights lawyers prevail, the state pays their legal fees.
Successful Advocacy with Disability Rights Lawsuits
In my state, we’ve had numerous threats to our Medicaid waiver program over the past five years. We’ve engaged in various forms of advocacy, including working with the legislature, using the media quite successfully, and creating petitions and campaigns. But we’ve only truly been successful when we’ve filed lawsuits.
In the case mentioned above regarding cuts to or elimination of private duty nursing, a lawsuit was filed on behalf of affected families. The judge rapidly ordered the state to restore the original nursing care hours and ensure hours would not be cut without a change in medical necessity in the future. This case is still pending.
Another case filed on behalf of children receiving private duty nursing in my state accuses the state of failing to provide approved nursing care hours. This case, which is also pending, has a judge’s order in place mandating the state do whatever possible to ensure that approved nursing care hours are being provided to children. Thus far, families have not seen an improvement in the number of hours provided, so some of the lawyers representing families will be returning to court to compel additional changes.
In 2012, when the state threatened to cut off hundreds of children from our Medicaid waiver program by implementing income restrictions, copays, and level of care restrictions, a lawsuit was filed to prevent these changes. Ultimately, the state withdrew the changes and the lawsuit was withdrawn.
My state’s Protection and Advocacy organization has also filed and settled numerous cases to help move people with developmental disabilities out of institutions and into the community. Similar cases have been filed or settled in numerous other states.
Many other cases are currently ongoing in other states. A case in California is underway to ensure approved nursing care hours are provided. A Texas case that forbids caps on nursing care hours, among other provisions, was settled after more than a decade. A case in Iowa is addressing cuts to home care due to the implementation of managed care.
When a Lawsuit is the Right Choice for Advocacy
Obviously, no one wants to file a lawsuit. They are expensive, take a long time, and are not guaranteed to be successful. Lawsuits also feel like a very drastic and aggressive step for many families.
But in cases that affect large numbers of people and where laws are not being followed, legal advocacy may be the best option in the long run. The pending legal cases and settlements in my state have not only preserved the rights of children to home care, but have also led to systemic change. For example, a case that was settled to allow individuals who attain age 21 to continue to receive home nursing care has led to a change in our Medicaid waiver program, extending it to all age groups.
The best way to use legal advocacy as a tool is to find multiple families experiencing the same problem and work with the disability rights law groups in your state to address them.
Without this type of legal advocacy in my state, families of children requiring home nursing would be severely affected by state actions. We are profoundly grateful to the numerous lawyers in my state who have worked tirelessly to fight for the civil rights of children who are medically fragile and technology dependent.