Sask. teen fighting for funding to receive 24/7 care near his post-secondary school

Preston Ruzicka wants to attend post-secondary school near his family, but also wants some independence. Preston and his family are frustrated that the province is not helping him live where he wants.

Preston, 18, has Duchenne muscular dystrophy and uses a wheelchair. He is enrolled at Saskatchewan Polytechnic in Moose Jaw, an hour away from his family.

After a long search, his family found a place for him to live that provides 24-hour care.

The only catch is the cost will not be covered by the province, much to the dismay of Preston’s mother Geraldine Ruzicka.

“Being able to live in an assisted living home, it would give Preston the ability to have his own little apartment with the care that he needs right outside that door. And they’re denying that. Yet a wheelchair-accessible home is not that easy to come by. They’re not just on every corner,” Geraldine said.

Geraldine said the province offered to have Preston stay in Wascana Rehabilitation Centre in Regina, but not the seniors’ care home in Moose Jaw that the family has found. She said most long-term care facilities are for only seniors, have long waitlists, or cater to people with cognitive, rather than physical, disabilities.

WATCH | Here’s why Preston wants to live in an assisted living seniors home: 

Preston Ruzicka, 18, has Duchenne muscular dystrophy. The college freshman has found a private apartment inside an assisted living senior’s home in Moose Jaw, but the province has so far refused funding. He says the Saskatchewan government will only pay for care inside “hospital-like” long-term care homes, which have waitlists, or if he finds a wheelchair-accessible apartment and hires more expensive private care that’s not 24/7.

“We’ve been told by Saskatchewan health that we should find three or four of his friends to live with him so that they can shower him and and put him on and off the toilet, and I don’t know too many 18-year-olds that would want to do that with another, let alone have that done for them.”

Geraldine said the home in Moose Jaw was the only place that would accept him based on his care needs.

“All we’re asking for is the least expensive option to the taxpayers and dignity for our son, who unfortunately isn’t able-bodied like his other friends and able to live wherever.”

Geraldine said if she assists Preston financially, he will lose his benefits under the Saskatchewan Assured Income for Disability (SAID) program.

‘Committed to supporting individuals with complex needs’: ministry

CBC reached out to the Ministry of Health for a response to the concerns raised by Preston and his mother. It provided a response Wednesday.

A spokesperson said the health and social services ministries were “aware of this case and committed to supporting individuals with complex needs in our province.”

The statement said the province cannot comment on specific cases due to privacy legislation, but that “Officials continue to work with the family to confirm the specific care needs of the individual and make further determinations with respect to programs or funding.”

The family says the ministry has not been working with them.

The spokesperson said individualized funding is an option under the Saskatchewan Health Authority’s (SHA) home care program, which allows people to live at home.

“This program allows the client or their guardian to hire their own staff to meet their supportive care needs. This funding is not to be used for rent, food or other costs outside of the client’s needs. Nursing and therapies are still provided by the SHA under this program.”

LISTEN | Geraldine Ruzicka spoke with host Stefani Langenegger on The Morning Edition: 

A Saskatchewan graduate is facing roadblocks attending his post-secondary school of choice due to his disability his family has found a place that provides care but they are having trouble getting the government to pay for it.It’s been a months long fight with fewer than 40 days until he begins school in Moose Jaw.His mom – Geraldine Ruzicka  – joins us to explain.

Preston sends letter to health minister

Also on Wednesday, Preston sent a letter to Health Minister Everett Hindley requesting a face-to-face meeting after seven months of correspondence.

Preston said the government set a precedent when it previously provided funding to one family in a similar situation.

“We have been tirelessly trying to communicate with your office requesting ministerial approval for the Alternative Client Specific Funding Agreement that was done for another individual,” Preston wrote.

“Your approval of this program would allow me to reside in a care home and attend post-secondary schooling like my peers while ensuring that my care needs are met both physically and mentally.”

Preston said the experience had been “one of the most challenging” of his life.

“I feel profoundly dehumanized and discriminated against. It is disheartening to realize that in such a supposedly inclusive country, I am denied the basic opportunity to live independently with the care that I require at no fault of my own and pursue an education based on government ignorance and outdated policies.”