AMHERST – Gisele Lewis is at her wits end.
The Amherst woman left her career in British Columbia and moved home with her ailing husband so he could be closer to her family. But, as much as she has tried, she cannot get the provincial government to support her under the Caregiver Benefit Program.
Her husband, Barry Inglis, has progressive supranuclear palsy, a degenerative disease that involves the gradual deterioration parts of the brain leading to problems with walking, balance and eye movements.
He requires round-the-clock care, but her application was denied and her appeals have gone nowhere – all because of an assessment completed on one of her husband’s “good days.”
“It’s just not right,” Lewis said. “We’re normally private people, but this makes no sense. My husband has a serious illness with memory impairment. Still, we can’t get any help.”
The grant would only be $400 a month, but with nothing but a pension to live on every little bit would help.
“I had to quit my job in British Columbia to look after my husband. It’s almost like I’m being punished for it. The program is only a small token amount to a caregiver who provides hours of care and helps ease the stress of living on low income,” Lewis said.
Lewis said her husband’s condition is continuing to deteriorate to the point he’s developed Parkinson’s related dementia. He is constantly falling and broke his shoulder blade and ribs in a fall several months ago.
Lewis said she loves her husband and wants to keep him home as long as possible. She heard about the program and figured it was something that would help. She was floored when her husband was assessed and the decision was made that the need wasn’t great enough.
She finds it very ironic that the provincial government is trumpeting everything it’s doing to keep people out of hospitals and long-term care facilities, but refusing to help those who need it most.
“He has a life-debilitating illness and that should be the end of the story,” Lewis said. “I’m doing what I can to keep him in the home. The question I have to ask is how disabled does a person have to be?”
Lewis is unsure if her situation will ever change, but she’s advocating for others in a similar situation.
“We were told the score is the score and it’s black and white. We are being told we don’t meet the requirements because our challenges are not high enough. It almost seems as though you have to be half dead to qualify,” she said.
Cumberland North MLA Elizabeth Smith-McCrossin recently raised the issue in the legislature. She feels the government has failed Lewis and her husband and others out there in a similar situation.
“Here’s a family trying to keep their loved one at home and out of facility care,” Smith-McCrossin said. “They just need a little help. The Liberals need to explain why this family has been denied the assistance that will help keep their loved one at home.”
Carla Adams, a spokesperson for the Nova Scotia Health Authority, said the authority uses a standard assessment tool called the interRAI-HC to assess client needs. Care coordinators use the tool on admission to Continuing Care and at regular intervals.
It’s a collective network of researchers and practitioners in more than 35 countries committed to improving care for persons who are disabled or medically complex. It promotes evidence-informed clinical practice and policy decision making through the collection and interpretation of high quality data.
She said interRAI Home Care is a user-friendly, reliable, person-centered assessment that informs and guides comprehensive care and service planning in community-based settings and it focuses on the person’s functioning and quality of life by assessing needs, strengths, preferences and facilitates referrals when appropriate.
“The interRAI HC was developed for use with adults in home and community-based settings,” Adams said. “The instrument is generally used with the frail elderly or persons with disabilities who are seeking or receiving formal health care and supportive services.”
Angus Campbell, the executive director of the Caregivers Nova Scotia Association, said he is familiar with situations like Lewis’.
He understands that while Lewis was turned down for the caregivers benefit, there are other options out there she should consider. He said the first option for her would be to appeal the assessment.
A couple of months ago, the province extended the caregivers program to approximately 600 more people by reducing the eligibility requirements. The assessment on Lewis’ husband was completed before this change, and Lewis is not sure if he can be reassessed under the new eligibility rules that say the benefit will be extended to someone with moderate to significant memory loss, problems with decision-making and communications that affect daily functioning, challenges in managing their personal needs, serious behavioural problems, a high risk of falls and a high risk of long-term placement.
Campbell said if a patient’s condition worsens the caregiver could ask for another assessment. He said having the doctor write a letter regarding his diagnosis and the patient’s condition should also help.
He said there is also a supportive care program that supports people with cognitive impairments by providing $500 a month toward home support services.
The difference between the two programs is the caregiver benefit would support Lewis as the caregiver while the supportive care program, that’s not reportable with the CRA and won’t be clawed back from other benefits, if for care only.