Measure Would Help Sufferers of Rare Neurological Disorder Receive Necessary Treatments & 24/7 Care
(TRENTON) — Legislation Assembly members Peter J. Barnes III, Patrick J. Diegnan, Jr., Linda Stender, Ruben J. Ramos, Jr., and Jerry Green sponsored to create specialized care nursing facilities for the treatment and care of patients with Huntington’s Disease was approved 63-4-10 on Thursday by the Assembly.
Assemblymen Barnes and Diegnan (both D-Middlesex) also issued a multimedia package on the legislation. The multimedia package consists of the Assemblymen discussing the need to implement their legislation and audio and a transcript of same.
“There is a real need to establish specialized care for Huntington’s patients,” said Barnes. “The quality of life of patients and their families should not erode completely, simply because of the disease. To prevent that requires specific supervision and care, 24/7, especially in the late stages of the disease.”
“Individuals with degenerative brain disorders require a level of care that few places in the state can provide,” said Diegnan. “Creating a place where they can receive the specialized care they need is the only humane thing to do for Huntington’s patients and their families.”
“The ramifications of this disease are devastating — in late stages patients must be hand fed meals and require intensive intervention for even the simplest of tasks, like sitting up or going to the bathroom,” said Stender (D-Union). “We have the capability to better serve this segment of our state’s population, so that their last days may be lived with a modicum of comfort and dignity.”
“Given the severity and unique nature of Huntington’s disease it’s imperative that we ensure that patients in New Jersey have access to proper treatment and care,” said Ramos (D-Hudson). “Expanding their capacity so that more families facing this disease can get the help they desperately need is more than just the right thing to do. It’s the compassionate thing to do.”
“The terrible thing about Huntington’s Disease is that patients progressively get worse,” said Green (D-Union). “If it is possible to give patients and their families the option of slowing or combating the ravages of this terrible disease through expanding access to the proper specialized care, we must seize the opportunity to do so.”
Huntington’s Disease is a hereditary neurological disorder that instigates a programmed degeneration of brain cells in sufferers, causing uncontrolled movements, loss of intellectual faculties and emotional disturbances. It is a familial disease, passed from parent to offspring via genetic mutation. The child of a Huntington’s parent has a fifty percent chance of inheriting the disease gene.
Early symptoms of Huntington’s include: mood swings; depression; irritability; trouble driving; difficulty learning new things; difficulty remembering facts; and increased difficulty in decision making. As the disease progresses, concentrating on intellectual tasks becomes more and more difficult and Huntington’s sufferers have difficulty feeding themselves and swallowing.
The bill (A-387) would require the state Department of Health and Senior Services (DHSS) to designate two facilities in the state — JFK Hartwyck Nursing, Convalescent and Rehabilitation Center at Cedar Brook and Leisure Chateau Care and Rehabilitation Center in Lakewood — as specialized care nursing facilities for individuals requiring long-term care for the treatment of Huntington’s Disease.
Currently, JFK Hartwyck at Cedar Brook is New Jersey’s only Medicaid-approved Special Care Nursing Facility (SCNF) for the treatment of patients with Huntington’s Disease, with a capacity to care for 24 Huntington’s patients.
This measure would expand the SCNF licensed beds at JFK Hartwyck at Cedar Brook and extend a SCNF designation to Leisure Chateau. Under the SCNF designation, the facilities would receive a $339-per-day Medicaid reimbursement, as opposed to the $193.48-per-day rate for typical long-term patient care.
Under the bill, the DHSS would be required to:
- Issue a SCNF license with 40 beds for the current Huntington’s Disease unit at JFK Hartwyck at Cedar Brook;
- Issue a SCNF license with 40 beds for the creation of a Huntington’s Disease unit at Leisure Chateau;
- Continue the existing Medicaid participation agreement for specialized care of Huntington’s patients;
- Authorize JFK Hartwyck at Cedar Brook and Leisure Chateau to expand their Huntington’s Disease unit license and Medicaid provider agreement upon demonstration that there is appropriate utilization and future need; and
- Adopt admission and discharge criteria for SCNF serving persons with Huntington’s Disease, which will also serve as the prior authorization criteria for Medicaid coverage.
The bill will now be referred to the Senate for more consideration.
The audio file is available upon request.
A transcript of comments from Assemblymen Barnes and Diegnan follows:
Assemblyman Peter J. Barnes III (D-Middlesex):
“Huntington’s Disease is a genetic disorder that afflicts very youthful persons, usually in their 20’s and 30’s, that has symptoms of loss of bodily control — bodily functions — that requires, ultimately, round the clock nursing care and that, unfortunately, is fatal.”
Assemblyman Patrick J. Diegnan, Jr. (D-Middlesex):
“This particular bill will access additional beds, so that those that are most in need will have access to the care that is desperately needed.”
“If Huntington’s patients were required to be housed in general nursing home facilities, these facilities would not be able to handle the Huntington’s for a lot of different reasons: physical therapy care that the average nursing home can’t provide; in addition, the Huntington’s patients need psychological counseling and their families need psychological counseling.
“The JFK Hartwyck facility and the Lakewood facility — Leisure Chateau — are the only two facilities in New Jersey that have developed this area of expertise over the last 15 or 20 years. The JFK, right now, has 28 to 30 [beds] and they would be allowed to go up to 40. And the same with Leisure Chateau. So we’re talking a grand total of 80 beds.”
“We as a society, our main goal should always be to help those that can’t help themselves. This bill will give the necessary access to basic medical needs.”
“Another reason that we’re doing this is to make sure that the persons who are afflicted with this disease — who develop this disease, which unfortunately is fatal — that their last years are spent in comfort and with the proper nursing and medical care.”