“In a way I felt like two people, and now I am one again.”

This is how Blind Low Vision NZ (BLVNZ) client Kay Clark describes the impact of the counselling she received while she was losing her vision. Clark, a parent with low vision in her early 60s, says she was privileged to receive counselling from Gary Veenstra, who she describes as “an amazing, supportive, professional person” who she trusted deeply. Until his retirement in 2019, Veenstra was a mainstay of BLVNZ’s combined counselling and social work service for almost 34 years.

It’s a service which had, in the past, assisted many a parent of a blind child, and anyone losing their sight who sought it, to regain their confidence and sense of self. But now, Clark is advocating for BLVNZ to recommence offering in-house counselling, after BLVNZ management quietly outsourced the service to Habit in May 2021, discontinuing the roles of all BLVNZ’s remaining counselling staff.

On one level, this is a story about how a service previously run and well-maintained by our main blindness service provider lost its way, and what comes next. On another level, it’s a story about accountability, and a lesson in what can go wrong when those in charge of guiding blindness service provision lack an articulated philosophy to orient it.

Until his 2019 retirement, Gary Veenstra had spent two decades as the BLVNZ Practice Advisor (team leader) for Child and Family Social Work/Counselling. In 1987, Veenstra was tasked with starting a “children’s” service for BLVNZ.

Till that time, social workers did needs assessments, provided emotional support, did basic indoor orientation and mobility, basic Daily Living skills, and delivered CCTV’s and talking books.

During a 1991 restructure within BLVNZ focusing on rehab, “Social Workers” became “Child and Family Social Workers”, and the counselling service for adults was eventually combined with this service. The counsellors worked with everyone, from sighted parents with blind or low vision infants, to youth, to adults and older people losing their sight. It encompassed a wide skillset: from perceptiveness about how parents’ relationships dynamics may be challenged if one of them is carrying out much of the advocacy for their blind little one, to finding what networks and resources an older person losing their vision could draw on (home supports, equipment training, community groups, friends etc.) to help maintain their self-esteem and self- confidence.

The service combined counselling and social work aspects. The social work part could involve referrals to health professionals, Work and Income for financial support, or to Ministry of Health-funded supports among others. Initially, the team mainly comprised people with a social work background who had counselling modules added to their knowledge, but in the 2010s, more counsellors were employed. Veenstra, in charge of hiring, sought mature people with considerable life experience, true understanding of grief and loss, and the ability to facilitate trusting relationships.

Induction and training processes were key. As Veenstra explains, approaching clients with background knowledge on the types of vision changes they were experiencing, as well as being equipped both for stages of grief and guiding them to gain back their independence and autonomy, was crucial for building trusting relationships from the get- go. Counsellors would be equipped for knowing that grief associated with vision loss can often trigger other forms of trauma and grief from the past including things like the death of a loved one or abuse.

When appropriate, they would know to ask questions like: “As you’re losing your vision are you seeing anything creepy?” Charles Bonnet Syndrome, involving visual hallucinations, often appears as people start losing their sight. When Clark’s counselling with Veenstra was in progress, she told him she was seeing ants in her vision and she appreciated that Veenstra knew about Charles Bonnet syndrome. It’s this kind of knowledge Veenstra, and Clark, worry has been lost with the outsourcing of counselling.

Until 2019, the two-three day induction for new hires covered scenarios they may encounter, as well as shadowing two different more experienced colleagues on visits, to ensure they gleaned a range of perspectives. For a time, BLVNZ had also set up an additional, compulsory, in-house training for all rehab staff including counsellors on understanding vision loss and common eye conditions. Veenstra also equipped members of his team with a book called “As You Can See” by Ross McKenzie. He described it as their “professional Bible” as included a plain English glossary of eye- related terms, and diagrams for understanding visual acuity, eye structure and eye conditions. Such thorough processes contributed, in Veenstra’s view, to the counselling service being an “outstanding quality team”, as he said was reflected in feedback received over many years and nominations for internal staff awards.

Outsourcing

From 2019-21, Veenstra’s institutional knowledge was no longer overseeing the team. Perhaps more significantly, BLVNZ Management and the organisation’s Board ( the RNZFB Board) agreed on a major restructure in 2019. A consequence of this was the disestablishment of practice advisors. Practice Advisors were the team leaders. Veenstra says his practice advisor role was a critical one, covering accountability to ensure appropriate and safe service was being provided, as well as motivating the team, supervision and checking in, and ensuring the team had the resourcing they needed to work.

The restructure overall contributed to the considerable internal cultural dissatisfaction among staff which led to the Board commissioning an independent inquiry which is currently nearing completion.

Meanwhile, a pilot of a limited form of service outsourcing commenced in 2019. Some Adaptive daily Living services were outsourced to Habit at this time, the idea being that the more straight- forward forms of assistance could as easily be administered by a third party with qualified occupational therapists all over the country. The Board agreed to this pilot at the time. It did not involve discontinuing the roles of existing BLVNZ staff.

In May 2021, BLVNZ Management subsequently took the decision to outsource counselling and discontinue the in-house staff roles. On what grounds this decision was made it is hard to be sure. In a disappointing lack of accountability, BLVNZ Chief Executive John Mulka declined to be interviewed or to comment for this article. RNZFB Board Chair Judy Small says the intention would have always been to maintain a good service. Habit does employ qualified counsellors, and has staff based all over the country, so should theoretically be more easily able to meet clients outside the main urban centres for in-person appointments. However, Veenstra says that to his knowledge, issues with geographical gaps in service previously arose only when position vacancies were not filled. Small also acknowledges that data on service satisfaction with counselling, in particular prior to 2019, was extremely limited.

Amanda Stevens, Executive Officer of the Deafblind Association NZ, but speaking in her personal capacity, says there are, in principle, benefits to outsourcing. It may lead to more choice over counsellors and thus more opportunity to find a good personal fit. She wouldn’t want the only option to be asking someone within BLVNZ, who could be a friend, to make a counselling referral for her.

For d/Deafblind people, there may be a small number of people within BLVNZ skilled in hand-on-hand communication who are then asked to assist with counselling. Being deafblind herself, she explains this raises issues of boundaries, informed consent, confidentiality, and how neutral that person can be especially in cases where a concern a client has relates to BLVNZ itself. She said the role of counsellors in relation to social work needs to be much clearer for clients.

That said, the prevailing view among those Focus talked to for this piece is that the decision to outsource, in particular without consultation, was ill-advised. Margaret Gilbert is a BLVNZ client in her sixties who has been progressively losing her vision over several years. When she first sought counselling support from BLVNZ, she describes a positive experience. She worked with a blind counsellor employed by BLVNZ who “listened and then provided guidance”, including by indicating specific areas like IT where BLVNZ could assist further. Over time, her vision worsened and she sought further counselling. By this stage, the service had been outsourced and she was passed to Habit. She describes her two appointments as “more than a little disappointing”, noting that her Habit counsellor “didn’t seem to have any understanding or knowledge of vision issues”. A contractor negotiator by trade, reading was critical to her previous work. She disclosed to her Habit counsellor that she wasn’t able to read any more, and was allegedly told that in fact now she has more time to read and that she needed to make more of an effort to be happy.

Gilbert feels BLVNZ made a mistake by outsourcing counselling and would like to see it brought back in-house. “If I could find a counsellor who was not just going to listen but was actually going to help, I’d jump at the chance,” she said. “I’m normally self-sufficient but this one has really gotten to me.”

Gilbert says she is speaking out because she doesn’t want others to have the sorts of negative experiences she did when seeking support, and she’d like to see relevant training in place for counsellors working specifically with people losing their vision.

RNZFB Board Chair Judy Small is not sure if any specialised vision- related training is in place for Habit staff nor whether Habit would know to refer clients to BLVNZ if a need for additional blindness skills support or other services was identified. She said these were operational questions. However, Small explained that when clients first approach BLVNZ, they talk to a Primary Service Provider, whose role it is to get a picture of their needs and direct them to relevant BLVNZ services and supports accordingly.

In June this year, Kay Clark wrote to the RNZFB Board, asking them to consider reinstating the service in-house. ” For the families of young children born with vision loss, as well as new and existing clients, it is imperative this service be delivered by compassionate counsellors, employed by BLVNZ who have trained in this specific field,” she wrote. Clark said that she was aware from reputable sources that the timeframe to receive help has lengthened and that at times, BLVNZ staff and volunteers not trained as counsellors or social workers have needed to fill this gap. She noted the provision of in- home service is no longer available.

Blind Citizens NZ National President Jonathan Godfrey says the organisation accepts that sometimes BLVNZ will need to use outsourcing to top up its ability to provide services like counselling but that BLVNZ had gone too far. “Totally outsourcing a key service that is important to our members without proactive consultation is an insult to the needs of blind, deafblind, vision-impaired and low-vision people who could find themselves in need of counselling,” Godfrey said. “Blind Citizens NZ looks forward to the review of services in order to ensure that the RNZFB Board is left in no doubt about which core services members believe should be provided by BLVNZ staff.”

Future directions

In 2023, the RNZFB Board will begin its review of services slated last year, including with a “deep dive” into the area of counselling and peer support. In addition, an objective in BLVNZ’s recently-adopted two-year Business plan reads: “Continued growth and expansion of community based emotional support and deafblind programmes with the key principle of frequent contact with those members in isolating circumstances.”

RNZFB Board Chair Judy Small emphasised the ongoing changes from the pandemic, as well as the diverse needs of clients, and the importance of catering to them and ensuring they can access supports that work for them. She noted that many clients have multiple disabilities and mental health needs, as well as a range of cultural backgrounds, and that it was important BLVNZ looked to find its role within this wider picture. She gave the example of ensuring that those not comfortable in receiving counselling in English could access an interpreter for this, and said this would be the sort of thing BLVNZ itself would need to administer.

Small suggested that peer support, such as by bringing together groups of refugees, older people, or people of a similar age, may be a significant part of the mix. She also noted that many people had reported positive experiences with BLVNZ’s TeleFriend service, a form of phone-based peer support administered by trained BLVNZ volunteers. She said that options were open and Habit may not be the only counselling service provider BLVNZ uses going forward. She noted that the roll-out of Enabling Good Lives, where individuals would be purchasing services directly was also an important consideration for what the make-up of options would look like. Other factors of relevance were the eventual phasing out of telephone landlines as well as ensuring options remained in place for clients without internet access or skills.

Amanda Stevens, meanwhile, would like to see BLVNZ engage with the New Zealand Association of Counsellors to develop service pathways for clients. She also suggests BLVNZ could offer a training module within the counselling Masters programme specialising in working with blind, d/Deafblind, and low vision people so that this reaches all counsellors completing that qualification. She cautioned that group peer support sessions should not be conflated with counselling and that doing so could place both clients and staff at risk.

RNZFB Board director and Chair of the newly-reestablished Client services committee Clive Lansink says an important part of reviewing counselling, and all services, is to understand the main objective behind why BLVNZ provides that service. He said Board directors, himself included, need to “have a better handle on the outcomes we are seeking, know whether or not they are delivered, and make sure they are in line with our objectives and currently accepted disability philosophy.”

If there is alignment between the RNZFB Board, BLVNZ management and the membership’s prevailing view on what principles should guide the provision of counselling and social work for the blind, low vision/vision impaired and d/Deafblind community, future services may once again be intentional about meeting the community’s diverse and ever-evolving needs. They may again glean the appreciation and praise BLVNZ’s in-house counselling had once widely received, before its ways of working and institutional knowledge were lost. For now, the organisation has a big job ahead of it in providing space for a nuanced and open-minded discussion on the service’s future directions, reflecting openly on what is and is not working and seeking to regain the trust of members who feel let down by a lack of transparent, member–driven decision-making.