ALS patient can't walk after fall while waiting for home retrofit help

The family of a New Brunswick woman with ALS is calling on the provincial government to streamline a program designed to help retrofit homes for people with disabilities.

Ruth Holt, a 64-year-old mother of two from New Denmark, was waiting for funding to make her bathroom wheelchair-accessible when she went in with her walker instead and fell on May 9.

She has been unable to walk since then. Now, she must be given sponge baths and lifted onto a commode in the family farm house.

Her husband, James Holt, who had applied in March for financial help to widen the bathroom doorway, says the Department of Social Development needs to move faster to assist people with ALS.

ALS, commonly known as Lou Gehrig's disease, is a neurodegenerative disease that attacks muscle function, and is often fatal within two to five years.

His wife, who was diagnosed in June 2015, has already lost 100 pounds since the disease took hold and is now finding it difficult to swallow.

Holt, a potato farmer, says his hours in the fields are consumed with thoughts about his wife, and the race between her disease and the pace of bureaucracy to get the financial help they need for essential home retrofits.

"Financial-wise, I just can't. I can't swing it," he said, adding it's a horrible, frustrating feeling.

Frustration grows

That frustration multiplied as he tried to deal with the Department of Social Development, which handles the applications.

CBC News asked to speak with the department about the process, as well interview Social Development Minister Cathy Rogers.

The department declined, citing privacy legislation, although CBC never requested to speak about the specific case.

Holt said he initially tried to apply back in January, but was told the program's budget had already been used up and not to bother applying until mid-April when the budget was renewed.

They need to wake up. ALS is a reality, disability is a reality. And their process for this is horrible.- Lisa Holt-Robinson, daughter

Then, the department wanted his tax return for 2015 before it would send him the application.

But as a self-employed farmer, he does not submit his taxes until the end of June.

Holt says he had to call his MLA and the chief executive officer of the ALS Society of New Brunswick to try to get the government to accept his 2014 return.

In April, he received notice that the 2015 tax return was still needed, as was confirmation that he was attempting to pay off the last of his 2015 property taxes.

A financial assessment was also required, and then an inspector had to assess the bathroom.

In the meantime, his wife of nearly 45 years fell.

Four days later, the family received approval for a $13,500 loan.

The approval isn't the last step, however. A sealed bidding process with two contractors will follow, and the department will choose the winner.

Holt said a department representative initially said a single bid would be fine, given the urgency of the request.

He said that later was overruled, and the requirement was two bids.

While CBC News was at the Holt's home, four bid envelopes arrived from the province, with a cover letter stating three bids were required. He knows that means another phone call.

Holt said while he understands the need for rules, he can never get the same person on the phone from the department.

He said each representative has a different answer about what the rules are, and those who want to help and try to streamline the effort, are often overruled by bosses.

'Onerous' process

Kimberly Carter, the chief executive officer of the ALS Society of New Brunswick and Nova Scotia, said staff at the Department of Social Development admit the process "is long, onerous, and does not recognize the sometimes very rapid progression of ALS and other terminal diseases."

For example, she said services are based on income from the prior year.

But, Carter said, the person diagnosed is often quickly unemployed, and in many cases, the spouse leaves work to provide care.

There are about 60 ALS patients in New Brunswick, according to the society.

Holt said the washroom retrofit was not the first project he tried to undertake with the department. 

Last July, a month after his wife's diagnosis, she couldn't negotiate steps and needed a ramp into their home.

He had looked into funding from the department but abandoned the plan when he learned of how long it would take to get the money. Instead, he got a deal on lumber and three neighbours' helped in order to get the job done.

"[If I hadn't] built it last summer, Ruth wouldn't have been able to get out of the house, at all," he said.

Lisa Holt-Robinson, the Holts' daughter, said the application process has been slow and frustrating.

"They need to wake up. ALS is a reality, disability is a reality," she said.

"Their process for this is horrible, and they need to change to two or three weeks, versus eight to nine. And we're probably looking at another month before anything can be started."

Ruth Holt says there is one bright spot in having the disease.

"My family is around more. I get to hug them and tell them I love them," she said.