One of the most troubling long-term consequences of many strokes is the effect on the ability to speak, write, or understand language.
But for the estimated 50,000 to 90,000 New Jerseyans with this condition, known as aphasia, help may be on the way.
Lawmakers are planning to launch a permanent statewide task force to help connect stroke victims with existing treatments while also expanding services that are available.
Research has shown that aphasia can be reduced if treatment begins early, incorporates group therapy, and makes use of computer programs that can help people relearn verbs and word sounds.
Advocates say these services can be made more widely available through a task force, especially in South Jersey, where fewer local providers are available. They note that these treatments are relatively low-cost, and would build on a state report issued earlier this year that recommended ways to make New Jersey a national leader in aphasia treatment.
A bill establishing the New Jersey Aphasia Task Force seeks to get a more accurate reading of the number of state residents with the condition; assess the unmet needs of people with aphasia and of their families; identify and help establish aphasia support groups; and provide recommendations to the governor and Legislature on further actions to help those with aphasia. In addition to strokes, traumatic brain injuries and certain types of dementia can cause aphasia.
Sen. Loretta Weinberg (D-Bergen), Sen. Robert M. Gordon (D-Bergen), and Assemblywoman Valerie Vainieri Huttle (D-Bergen) sponsored the bill.
Kean University Professor Mary Jo Santo Pietro said that while many people with strokes have coverage for speech language therapy for up to three months as part of rehabilitation treatment, after that period they “have literally no access to services” outside of going to hospitals.
Santo Pietro served as the chairwoman of the New Jersey Aphasia Study Commission, launched in 2012, which issued its final report in May.
While the commission used available information to estimate the prevalence of aphasia, many people remain uncounted, including roughly one-third of state residents who have had strokes and approximately 2,000 residents annually who move into nursing homes.
Santo Pietro noted one study that estimated that 90 percent of people with aphasia have clinical depression, a much higher share than was previously understood.
But the state’s ability to connect people with available resources is lagging. For example, Santo Pietro noted that the state Division of Developmental Disabilities doesn’t list aphasia-related services on its site, “let alone where they can get services.”
Santo Pietro said the additional cost of expanding services in South Jersey and making more people aware of services across the state would be partially offset by the benefits of delaying the need for people with aphasia to enter nursing homes.
Karen Tucker, executive director of Adler Aphasia Center, described the possibility of a permanent task force as “the first step of addressing the unmet needs of people with aphasia in New Jersey, and their families.”
Todd Von Deak, executive director of the advocacy organization Aphasia Access, said increased support for people with aphasia in New Jersey could benefit a broader population of people with communication-related disorders. His group has been working to train healthcare workers in to recognize patients with aphasia and improve their communication with them.
Von Deak said work that’s already gone on in New Jersey “have established the state as a national leader in the conversation about aphasia and the broader issue of communication access.”
The New Jersey Speech-Language-Hearing Association, a trade group for speech language pathologists and specialists, as well as audiologists, supports the bill.
The task force would have 13 members, including the state’s health and human services commissioners; five members representing each of five existing aphasia support and treatment programs; and six public members, including two people with aphasia, two professional caregivers, and two speech-language pathologists.
The task force would have 12 months to report to the governor and Legislature with any recommendations.
The Senate passed the bill 39-0 yesterday. The Assembly version has been referred to the Assembly Health and Senior Services Committee.