Rolling Reveals - Independent Living Centre
The Independent Living Centre (ILC) located at the Netcare Rehabilitation Centre premises in Auckland Park, Johannesburg, is the only such facility in Africa. Their Mission Statement says they are "an integrated resource centre, for persons with disabilities. The centre provides a community based service, using a holistic approach to assist disabled (sic) tofind solutions that enable them to lead independent lives."
When RollingInspiration visited the ILC with Marc Maritz (a pseudonym), who is a quadriplegic in need of advice, we found the ILC's motto: "Information is knowledge; knowledge is power" an empty promise.
When "Marc" phoned the ILC he was told he didn't need an appointment, as there is always someone there (between 09h00 and 16h00) to assist. It took him 45 minutes to get to the ILC but, when he arrived at 10h00, he found only a receptionist and no evidence of the five employees mentioned to our reporter last year (social worker, occupational therapist, administrator, cleaner and Ms Letchman, the director). The receptionist, Dorothy, doubles as a guide, salesperson and procurements and administrative officer. When asked what this entails, she answered: "I help people to get disabled stickers for their cars and show them the products we have in stock. Anything we don't have, we can order. You'll have it in more or less two days."
Complaint posted on DPSA website (2010-03-11)
'I'm also intending to apply for a parking permit for the disabled, but the websites are most confusing andunhelpful. The Independent Living Centre at Auckland Park sent me a really grotty copy of a form prescribed under Schedule 2 of Act 29/1989.'
Bathrooms and Kitchens
Marc wants to cost-effectively convert his bathroom and kitchen for wheelchair accessibility. He heard that the ILC had an accessible, fully equipped bathroom and kitchen to look at. After seeing their bathroom all Marc could do was laugh."Maybe I will manage to lift onto the toilet but thereis no way that I will be able to lift myself back onto my wheelchair as thereare no grab bars!" He was taken across to Netcare Rehab's bathroom but, even there, the shower had a step.
Whilst the ILC's kitchen is accessible it does not belong to them, it belongs to the Netcare Rehab Centre next door. Dorothy was also unable to answer Marc's kitchen questions, such as why there is a round hole in one of the drawers (which was in any case too high for him to reach!).
When he asked if the ILC could recommend a company specialising in kitchen conversions, Dorothy did not have this information, but promised Ms Letchman would provide it to him as soon as she came in "before 12h00." That was Monday,16 April. Ms Letchman finally contacted Marc ten days later (26 April) "after numerous calls from Marc“ and recommended a kitchen supplier.
When we asked MsLetchman’s recommended supplier what he specialises in, he answered: “houses,kitchens, shops, you name it. You show me a plan and I will build it for you.”He has never built a kitchen for a disabled person and is not a member of theKitchen Specialist Association (KSA). This is particularly strange as the ILC isan affiliate member of the KSA. When you google “doreen letchman”, the KSA websiteis about the 7th result.
INSERT PIC: SAYellow
When we phoned the KSA we were told that: "Anybody canbecome an affiliated member of KSA. By ensuringyour selected kitchen company uses KSA-affiliate members for their supplies youextend the protection the KSA can afford you." So why did Ms Letchman recommended a non-KSA company?
Our next stop at the ILC was a tour of the merchandise on display. This comprised two grab rails on a wall and a variety of very dusty items on an equally dusty display table. Some items were in boxes under the "display table."
Dorothy was unable to provide us with any prices as only Ms Letchman can supply these, and she was still not in. The alternative,we were told, was to go to the Netcare website where there is a price list. We later checked www.netcarerehab.co.za and there is no price list that we could find.
Marc has been using a wheelchair for three years now but some of the merchandise was still foreign to him. There were no brochures or information leaflets available for the items he was interested in, Dorothy was unable to assist and 'Ms Letchman was still not in. We eventually found three A4 brochures on astand in a corner, listing the ILC's contact details, listing what they offer (noprices) and their NPO number: 035-869.
Marc's next question was whether the ILC could assist with occupational therapy (OT) or physiotherapy. Whilst the ILC has an OT listed on their staff, we were referred to Netcare! "Let's just walk to the Netcare side where therapists are busy with patients and ask them."
Few people with disabilities have access to accessible transport, public or otherwise. When Marc phoned the ILC to book an appointment he also requested that they send an ILC vehicle to collect him. He was told thatthere was no car available. In a 2011 interview with Ms Letchman she told us the ILC had two vehicles available, a Honda and Mazda, for transporting people with disabilities to and from the ILC. She also said that the Honda had removable hand controls for people with disabilities to test drive. While we were there with Marc we saw no ILC vehicle.
When Rolling called the number provided by Dorothy for information on importing a modified vehicle, we got through to the NationalCouncil for Persons with Physically Disabilities South Africa. When asked if they could recommend a one-stop solution for people with disabilities, they did notmention the ILC.
We spent about three hours at the ILC with Marc. During that time one person (not in a wheelchair) came to pick up a disability parking sticker. "It costs R100 for a parking disk and we collect it from the Traffic Department on a Thursday every week. You get only one", said Dorothy, adding: "You may just as well go the Traffic Department as you need to register your car at the Metro Police Department. I am not sure if you get a disk when you register andif you will have to pay extra for the disk."
When we asked the ILC Director, Ms Doreen Letchman, to comment on our observations and answer some more questions, she refused to comment, saying that we had interviewed her last year - which is true. As that interview took place in 2011 the information was dated and we had hoped to provide ourreaders with up-to-dated information. (See our list of questions in the inset box.)
Marc? He is now more confused than ever.
The board members of the ILC include: Dr Richard Lebethe, his mother, Grace Lebethe and his wife, Dr Di Makgato as well as Ms Doreen Letchman and Stanton van Schalkwyk.
According to a source at one of South Africa's biggest NGOs, it is highly irregular to have three members from the same family servingon a NGO board.
Definition of an NGO
A non-governmental organisation (NGO) is a legally constituted organisation created by natural or legal persons that operatesindependently from any government. The term normally refers to organisationsthat do not form part of the government and are not conventional for-profit businesses. Where NGOs are funded, totally or partially, by governments the NGOmaintains its non-governmental status by excluding government representatives from membership of the organisation.
Both Dr Richard Lebethe and Mr Stanton van Schalkwyk have government
We asked various establishments about their relationship with the ILC:
Netcare Rehab Centre, Auckland Park (on the same premises as the ILC)
"We offer physio-, speech- and occupational therapy, as well as psychology sessions all under one umbrella. We have not made use of the ILC for most probably the last six years."
"We also don't refer people there as we do everything ourselves.We have no need for the Centre; not to mention that feedback from patients from there has not been positive. We used to source our in continency equipment fromthe Centre as well as certain devices, but we have not made use of this service for a long time."
Gauteng Provincial Association for Personswith Disabilities
Director, Ms Beena Chiba, told us: "The ILC is not affiliated to us. We see ourselves as the umbrella body to the majority of organisations thatserve people with disabilities, and as such strive to have as many as possible affiliated.This is necessary to create uniformity, standardisation of services and to prevent duplication and fragmentation of services."
She had a meeting with the director of the ILC, Ms Doreen Letchman, in 2010 to discuss the advantages of being affiliated to the GPAPD. "I emailed her the application forms the same day (19 April 2010) and later followed it up with her. She promised to come back to me with an answer as shehad to clear it with the board members first." Two years later Ms Chiba is stillwaiting for a response from the ILC.
Comments from the CEO of QASA,Mr Ari Seirlis:
"It seems the talk of the demise of the Independent living Centre is not just talk, but is now proven true. What started off as anamazing brand and service seems to have ended in what seems like a morgue and museum.This facility clearly does not live up to its mission. Is this another case of able-bodied persons running facilities for people with disabilities, having lost their passion and purpose? For their own benefit? We in the disability sector must recover these facilities and make sure that they operate as they should, and do what they receive funding for, or ensure that they close down. Surely the board of management of this organisation is accountable for what ishappening? This is the sad story of an institution, that had the potential to be the stepping-stone to independence and greater knowledge for people with disabilities, having been run into the ground by an individual more concerned about her own well-being and enrichment and than the livelihoods of people with disabilities. An absolute shame."