Accepting Retinitis Pigmentosa

Retinitis Pigmentosa (RP) is a progressive eye condition, which often starts with poor night vision and deteriorates with time. It can be difficult to accept you have a vision impairment that will worsen in years to come. The process usually brings with it a range of emotions.

At the end of 2020, VisAbility partnered with the Lions Eye Institute to better connect people with low vision to VisAbility’s services. As part of this initiative, Social Worker Marija Clark meets people recently diagnosed with eye conditions at the clinic.

Specialists at the Lions Eye Institute diagnose eye conditions, and VisAbility offers a range of support services to people with low vision.

Our Social Work Services can provide help to manage emotions relating to vision loss and work with you to reach future decisions which affect your life. They also have a depth of knowledge about available financial entitlements and benefits.

Marija sits next to Adrianno in a consulting room with eye chart in background
Adrianno appreciates the support he’s received from Marija

It’s natural for someone with vision loss to worry about their financial future – that was the case for Adrianno from Noranda. His ophthalmologist at the Lions Eye Institute Dr. Fred Chen (link opens in new window) made an initial introduction to our Social Worker Marija.

Retinitis Pigmentosa diagnosis

Adrianno was eighteen when he received his Retinitis Pigmentosa diagnosis. His family is originally from Italy. Adrianno moved to Perth when he was seven.

“I can honestly say I have been in denial since then about my condition. A year after my official diagnosis at age 19, I went travelling. I had an urge to see the world. I was young and adventurous. In the back of my mind, I was thinking I better explore it now while I have good vision,” he explains.

For many years Adrianno didn’t experience a marked deterioration in his sight.

In 2008 while he was in his forties, he suffered a heart attack. It was a wake-up call to take better care of his health. He went on holiday to Thailand and met his wife, Nongnit.

”She has been my rock. She married me knowing that I’d had a heart attack and that I have retinitis pigmentosa that will lead to eventual permanent sight loss.”

It was Nongnit who recognised that Adrianno’s eyesight was gradually getting worse.

One day, Nongnit took away my car keys and said ‘you need to accept your retinitis pigmentosa diagnosis’. I knew my vision was bad, but I was fearful to admit it.

Adrianno

Social work support

Adrianno received a referral to Dr. Chen. During the COVID pandemic, he’d stopped working and was receiving jobseeker payments. Because his eyes were deteriorating rapidly, he’d also been investigating the Blind Pension. He knew he needed to understand more about entitlements and benefits.

Adrianno smiling and sitting in consulting room to learn more about entitlements and benefits
Adrianno has retinitis pigmentosa and his vision is becoming worse

Adrianno didn’t know anything about the National Disability Insurance Scheme (NDIS) (link opens in new window) and his entitlements. He knew he wanted to carry on working if at all possible. Dr. Chen referred Adrianno to Marija.

“Adrianno is a proud man and didn’t want to be a burden on anyone, but he was struggling to understand what support was available,” says Marija.

“If you have never experienced the NDIS before, it can be an overwhelming experience. It can be a minefield, and that’s where I can help.”

Marija – VisAbility Social Worker

Entitlements and benefits available

Adrianno explained to Marija that he had surrendered his driving licence because his eyesight was poor. The first thing Marija suggested was that he apply for a Vision Impairment Travel Pass. It would entitle him to free travel on all Transperth and regional services.

“I then told him about the Blind Pension. It’s independent of his wife’s income. Adrianno is eligible to receive the Disability Support Pension while he’s not working,” Marija explains.

“I’ve been in this role for a while, and I’m aware of the terminology and evidence you need to provide for these benefits – for example outlining that you are legally blind. I also know about supporting documentation required from ophthalmologists and specialists.”

NDIS planning

Marija supported Adrianno with his first telephone appointment with his NDIS planner.

“I feel as though Marija is my advocate and my cheerleader. She’s a highly experienced social worker and has vision impairment herself, so she can appreciate what I’m going through,” Adrianno explains.

“The NDIS Planner believed that I could catch public transport, but I knew I wasn’t confident enough to do that. I wanted to do some Orientation & Mobility training first. Using public transport and going on long journeys can be physically demanding. At this stage, I’d prefer to make use of the Taxi Users Subsidy Scheme (link opens in new window).”

During the call, Adrianno spoke of the therapies he’d like to receive.

“I thought exercise physiology would benefit me because of my past health issues. It wasn’t something the planner had considered.”

Moving forward and exploring VisAbility services

Adrianno says the three sessions with Marija have been highly beneficial.

“It can be a battle finding your way through the system. I liken it to panning for gold. You have to get through a lot of dirt or muck, and then you’ll strike lucky and find what you’ve been searching for all the way along. Marija has been there to assist throughout the process.”

Marija also introduced Adrianno to the different therapy supports provided by VisAbility.

I’ve already been to the shop to look at magnifiers, and once my plan comes through, I will benefit from other therapy services. I am so grateful to Marija. It’s been great to have her support through this initial process.

Adrianno – VisAbility client

All our social workers are highly qualified. Support includes advocating your circumstances to Australian Government departments and other organisations – including your benefits and entitlements. They can also offer guidance to improve your emotional well-being. Read about our Social Work Services for more.