Chained outside No.6, a mother appeals for help for daughter 

A mother fighting for better conditions for her disabled daughter chained herself to a cannon outside No.6 Convent Place on Monday, putting a spotlight on her family’s plight and calling on the government to do more to help. 

Maryam Senouni, mother to 15-year-old Yamina, said her daughter was diagnosed with PURA Syndrome, a rare genetic disorder that affects neurodevelopment, earlier this year after 15 years of medical investigation. 

Yamina is wheelchair bound and requires assistance and care 24 hours a day. 

She and her family currently live in a first-floor flat at Mid Harbour estate, which lacks the necessary space and equipment for her to be taken care of adequately. 

Chained to a cannon outside No.6 Convent Place, Ms Senouni told the Chronicle that her daughter’s dignity and basic human rights were being violated. 

“Basically, PURA Syndrome is severe developmental and global delay, she feeds via a gastric tube and it affects all her bones,” she said. 

“We are here today because unfortunately our housing and living conditions are not adequate for Yamina’s needs.” 

“We don't have the proper equipment to actually lift her up.” 

“The lift also breaks down and we need to call the fire brigade sometimes to help us out with her.” 

“I had meetings last week with the Minister for Equality and the Minister of Health because I wanted to see what they could do, but the outcome of the meeting was that, basically, my case is a needle in a haystack because they can't allocate for our family because of her needs.” 

Ms Senouni and her family require a ground floor 6 RKB flat so they can fit it with a wet room and have adequate space for a hoist and plinth to cater to Yamina’s needs. 

“I would like somebody to take this seriously,” she said. 

“Just saying that this is a needle in the haystack is not enough.” 

“I want a solution, not because of me but because of Yamina.” 

“Unfortunately, I’ve been on the medical A-class list now for three and a half years, and nothing has become available for her needs.” 

Yamina’s current living conditions place her at risk of worsening her condition, Ms Senouni told the Chronicle. 

“The thing is her health has deteriorated in the sense that she was seen on Friday by the visiting consultant paediatric orthopaedic, and I've been told I’ve got about six months to think about for her to be having or undergoing major hip surgery.” 

“And this is because basically she's just sat all day in her chair.” 

“She only has quality of life in school. That is where she has floor time and they have the proper equipment to deal to deal with her. I don't even have a hoist.” 

“And they've told me that I'm also putting her at risk because I'm just lifting her up with no proper manual handling [a reference to the hoist], so I could even make her condition worse.” 

“I don’t have any carers either because obviously they can’t be put at risk, they can’t come to my house and work without the proper conditions.” 

“Nobody sees that I have to do that without the proper equipment,” she added. 

Ms Senouni urged the Government to provide a solution before it is too late. 

“At the end of the day I'm human too. I've basically been pushed to the limit,” she said. 

“This problem has to have a solution sooner rather than later, [because] every year her case gets worse.” 

She added that her family’s plight highlights Gibraltar’s housing problem. 

The Minister for Housing, Pat Orfila, and Christian Santos, the Minister for Supported Needs, went to No.6 Convent Place at around midday on Monday and spoke to Ms Senouni. 

Ms Orfila said she was “very saddened that we have reached this point”. 

“Housing is trying its hardest,” she said. 

“The thing is, we know that there are many very large houses and maybe one person living in that house.” 

“But we cannot go around asking people to leave their homes or vacating their house because we need it.” 

She appealed to any government tenants in properties that might suit the family to contact the Housing Department if they were willing to consider a swap. 

“It obviously has to be ground level and there has to be potential to convert it into a very large house,” she said. 

“The housing department is definitely working with her and her family in order to find the solution.” 

Mr Santos told reporters outside No.6 that he is in regular communication with the family. 

“I know that there are issues that still need to be resolved, but from a government perspective we're working very hard to make sure that everything gets resolved in due course,” he said. 

But after meeting Ms Orfila and Mr Santos, Ms Senouni said the problem was still there. 

“They don't have a home suitable for my daughter,” she said. 

“If the housing issue is not resolved, nothing is going to come to place. If you actually find a solution to the housing, everything will go to its place.” 

“I will be happy once there is a solution.” 

“It is becoming a matter of urgency,” she added. 

“I’m very angry and disappointed.” 

Ms Senouni said she would continue to highlight the case and did not rule out repeating the protest once a month until a solution is found. 

The Government confirmed in a statement on Monday afternoon that a multi-agency approach is in place to assist the family. 

“Arrangements for respite care have been discussed and agreed, following established care pathways to ensure seamless provision of services and a holistic multi-agency approach,” the statement said.  

“Further assessments will take place in November/December to support the transition to Adult Services in January.” 

“Occupational Therapy appointments to assess chairs so they can be adjusted and customised have been set for October 1.”  

“The Care Agency is aware of the need for more carers with specialised training in complex cases and is actively recruiting to fill this gap in service delivery.”  

“Additionally, the Housing Department is actively working with Occupational Therapists to explore housing options suitable for the family’s specific needs.” 

“Unfortunately, the family’s requirements can’t be met with anything in the Government’s existing housing stock, but all potential avenues for a solution are being considered and followed up.” 

The Chief Minister, Fabian Picardo, added in the statement: “The Government is sympathetic to this family's unique and difficult situation and is doing everything possible to provide the appropriate support and care.” 

“Whilst all reasonable avenues are being actively explored, the Government is unable to provide homes that do not exist or remove services from others in order to provide them here.” 

“The Government will continue to work with the family to find reasonable, appropriate solutions in so far as is possible.” 

Yamina’s plight and the protest outside No.6 Convent Place also drew a reaction from the Opposition. 

Atrish Sanchez, the GSD MP who shadows the special needs and disabilities portfolio, said the family is “not interested in the technicalities of the situation, they want solutions to the everyday struggles that they’re experiencing”. 

“I think that the Government should really throw all its efforts in to try and assist this family,” she told the Chronicle. 

“We need to find equitable solutions that fit this family. This is not being done for this family.” 

“Evidently, they feel the need and the desperation to come here and do what they've done.” 

Opposition MP Damon Bossino, who shadows the housing portfolio, said the family’s situation is “unacceptable”. 

“If a government is to call itself socialist, then this is something which cannot happen, and has to be resolved as soon as possible,” he told the Chronicle. 

“It is the government's political, and indeed, I would have said, social and moral responsibility to sort this issue out as soon as possible.” 

SNAG 

The Special Needs Action Group (SNAG) said the protest marked “a very sad day for Gibraltar”. 

“A family has felt the need to chain themselves to No 6 to highlight the issues they have been going through with their disabled daughter,” the group said in a statement. 

“This is extremely concerning and very serious. A family driven to this extreme action is heartbreaking.” 

“Their issues are not new to anyone within the relevant government departments. Everyone that needs to know understands the complexities of the situation but for some reason, the issues have not been tackled adequately and we have arrived at a point where extreme measures have been taken.” 

SNAG added that the family does not need words of comfort but needs solutions instead. 

"You will now hear comforting words form Government ministers that they are doing all they can to sort this out but the reality of the situation is that the problem existed yesterday, the day before yesterday, the day before that, and the problem is here today and tomorrow and the day after until a solution is found.” 

“This family doesn’t need comforting words, they need actions and solutions.” 

“It is unfortunate that, had there been a long-term plan in place 15 years ago, the family would not be in this predicament today.” 

“SNAG will continue highlighting the issues people with disabilities have because we do not want to live in a society that marginalises people because they so happen to have a disability. Anyone with ‘complex needs’ have equal rights as to those that don’t.” 

The group urged government departments to work together and give the family “hope”.