Kelly, Deb and Toni: ‘Don’t go down without a fight’
Kelly is a 23 year old Pākeha and Māori woman living in a large city. She enjoys football and spending time with her boyfriend. When she was 21 she found out she was pregnant. She had recently moved out of residential care and into supported living available for people with learning disabilities. She has a mild learning disability and spent time in fostercare as a young person. Here, she and her friend and support worker Deb, share their story of courage and collective advocacy that enabled them to keep Kelly’s son with them. Toni was a powerful advocate who helped achieve this.
“Like a mother hen”
On the day she found out she was pregnant, Kelly told Deb, her support worker. Deb has worked with people with disabilities for many years and has two children with disabilities herself. She describes her relationship with Kelly as like ‘a mother hen’. Kelly and Deb had become close as Kelly had shared some of her life story with Deb, and Deb was very protective of her as a result.
Deb and Kelly went to the doctor to confirm the pregnancy, as Kelly had already organized a pregnancy test for herself. The doctor arranged a scan, and asked her about her support networks. Kelly stated that she is ‘not allowed’ to be around her parents, and the GP notified Kelly to Oranga Tamariki. This came as a surprise to Deb:
“We organised an ultrasound and all that sort of stuff and then tried to find a midwife and all that sort of stuff, meanwhile a notification had been made to Oranga Tamariki.”
Kelly was four or five months pregnant at this point.
“We wanted to understand what they were thinking”
For the first OT appointment, the OT social worker tried to see Kelly alone, but Deb was not happy with this, and made sure she attended. In that meeting, the OT social worker implied to Kelly that due to her disability, she would not be able to parent, despite no assessment of her parenting capacity having been undertaken at that point.
Straight after the meeting, Deb phoned an IHC advocate and her boss, Toni, to create a support and advocacy network for Kelly. Toni is the manager of a large organization that supports people with disabilities. OT called a professionals meeting, and Kelly invited another advocate as well. At this meeting, the OT worker stated that “due to Kelly’s intellectual disability, there’s no way she’s ever going to be able to be a parent”.
Deb felt this was a rushed and indefensible conclusion, given what she knew about Kelly. Kelly accepted she would need some help and support with the baby, and meetings with Family Start were organized. Kelly was open about the fact that she would need some help with the baby and there were many people supporting her with practical arrangements at this time.
At this time, Kelly had mixed feelings about being pregnant. She had suffered two earlier miscarriages, so was hopeful but apprehensive about carrying this child to term. At one point she considered termination, but she was too far along when she discovered she was pregnant. She was also nervous. “I was scared I was gonna make the same mistakes as my parents.” Despite her apprehensions, Kelly felt that the assumptions Oranga Tamariki made about her were unfair, especially as they were based on just a few pieces of information.
Deb and Toni became more concerned about the kinds of questions that were being asked of Kelly. They, along with Kelly, met with an OT social worker to discuss these concerns. Deb described her worry that Kelly was being judged both on the basis of her disability and on the basis of having been in care. They found it difficult to get answers:
“We wanted to understand what they were thinking and why and what their next steps would be. They kind of minimised, they said there was no direct link for them because she had been in care and had an intellectual disability.”
Deb and Toni felt that the fact of Kelly’s estrangement from her family was being interpreted as that she would not have any support to parent. In fact, they felt that the support available to Kelly through the disability support system could be a significant benefit. Toni noted:
“I don’t think they understood the potential positive interface between the care and protection system and the disability support system… When we talked about the support that was available to Kelly for life, they didn’t appear to place much weight on that or understand that, you know, we were pretty knowledgeable about these things. We provide services in the community and understood Kelly really well and what kind of support she needed to live the life that she wanted”
“Don’t think I can ever forget that day”
When Kelly went to hospital to have her baby, it was still unclear what decisions had been made about the baby. Billy, her baby, was born early, and plans had not really been made. While Kelly was giving birth, a call came through from Oranga Tamariki to say they had decided Kelly could keep the baby. As Deb describes it:
“Like literally Kelly was giving birth, or had just given birth within minutes, when I got a phone call from the OT social worker to say we’ve made a decision that Kelly can keep her baby.”
Oranga Tamariki asked that someone be with Kelly and the baby all the time. Deb and others set up a roster to ensure someone was in the hospital constantly. Billy was born prematurely and had to go to NICU for monitoring, and Kelly also required extra care, but as they both became healthier, a plan was made for them to move into a family room together. Kelly and her support workers arranged for her and Billy to go to a voluntary residential unit for mothers and babies when discharged. This was a local service.
This plan changed rapidly when there was a call to Deb from an Oranga Tamariki social worker to say there was going to be an immediate uplift of Billy. The social worker said that the hospital staff had raised ‘concerns’, but the nature of those concerns could not be shared due to privacy. The nature of these concerns was not shared with Kelly either; she had to obtain them later through a request of her own records.
The records showed that the concerns were focused on the way that Kelly was holding baby Billy. If Kelly had been asked, she would have been able to mention that she is left-handed, she had just been diagnosed with carpal tunnel syndrome, and the anesthetist had damaged her hand when giving her medication during birth, leaving her hand sore and swollen from the hand to the elbow. These issues affected the way she was able to hold Billy immediately after birth. As the concerns of OT were never stated to her or her support workers, this was never explained. Deb suspects that these issues were just a pretext for a previously planned uplift. Kelly feels it was really because “it was just my parents and me being in care.”
Oranga Tamariki staff arrived and took Billy that night from the hospital. There was some ‘talking’ first but then the doctor came to examine Billy and then Kelly started to feel suspicious:
“I started asking questions [about] what was happening, whatever he was doing and then [disability support advocate] came in and I’m like, ‘it’s not even visiting hours’.”
Kelly said that Deb broke the news:
“That’s when she told me, then yeah… That’s when I saw [OT social worker], then got handed the Court papers. I’m like, stuff this, wanted to punch something, I’m like nah I can’t do that… I said my goodbyes to Billy… and got in the car… Don’t think I can ever forget that day… he was only a week old”
Her support workers were able to take Kelly home to offer her support. Without them she would have been stranded at the hospital, distraught. Billy was placed with an emergency caregiver. The reasons for Billy’s removal were never made clear. Toni noted that “[even] after the family group conference, you know they still have not put on the table their reasons. You know, what was the reason for the uplift? What evidence did they have to indicate that, you know, Billy was going to be at risk?”
“They kind of like watched my every move”
After the removal there were several meetings involving Kelly, OT, Toni, Deb and the other support workers. Deb felt that they had to be ‘bolshy’ to be heard. Kelly had supervised visits with Billy at a community house, held in small rooms with multiple watchers. Kelly felt that “it was just too crowded and especially since they were in there, I kind of felt like they kind of like watched my every move.”
The group of advocates argued for Kelly to have Billy returned and at first things looked hopeful. However, a local residential unit who had previously offered to support Kelly and Billy withdrew their offer unexpectedly, stating that they ‘couldn’t provide the level of support required.’ Toni thinks Oranga Tamariki had spoken to the unit staff and insisted on 24 hour supervision. Kelly was informed that the only option with enough ‘support’ was a residential placement for mothers and babies in another town, 5 hours drive away.
Kelly and Toni were aware that there were widespread community concerns about the particular Oranga Tamariki site office they were dealing with. Toni tried to contact the Minister for Children, but was informed that it was an ‘operational matter’ and referred back to the regional manager. She said that Kelly’s support team frequently had difficulties with senior OT staff. It was felt that those staff had formed their view and were unwilling to listen to the idea of an integrated plan that could effectively support Kelly and Billy.
Toni noted that many of Kelly’s support team had been social workers and worked in the field of child protection. She felt that the priority should be on “good levels of inter-agency collaboration and co-operation”, but this wasn’t evident. She described the ongoing struggle of raising concerns but having those concerns dismissed:
“We had big concerns about the standard of social work practice… I wanted someone to review the practice that was going on in this case and the decisions that were being made… I had no confidence in the social worker and felt that her managers were driving down, you know, a pathway where there were really limited options for Billy and Kelly.”
Kelly’s team struggled to have their voices heard:
“Although we were supporting Kelly’s rights as a person with a disability, we tried to frame it that this was Billy’s right to a family, to have a strong bond with his mother, that we weren’t wanting disability rights over Billy’s care and protection rights. We were, you know at this early stage, very much aware of the need for them, for Billy to have a primary attachment with Kelly and whatever that looked like… I think they kind of dismissed our views as kind of, you know, airy fairy rights activists that weren’t really in tune with the practical realities of child protection but …we had people on the team who knew about this stuff”.
“She was never really given any option”
A family group conference was held, but there was non-agreement, as Deb, Kelly, Toni and the other advocates would not agree that Billy was ‘in need of care and protection’. They felt that because they had a support plan and resources in place, this meant there was no need to come to that conclusion.
After the FGC, the choice of supports was limited due to the removal of the option of the local mother and baby unit. Deb said that Kelly was forced in to making a difficult decision about Billy’s care:
“She was never really given any option. [OT said that] if you wanna have any sort of relationship and chance of getting your child back, this is what we’re offering.”
Kelly was told she could either choose ‘home for life’ for Billy (i.e. permanent placement with caregivers) or to go to the residential placement five hours away. Kelly choose the residential placement. Deb flew there with her and Billy. Kelly had not cared for him since she was in hospital giving birth, and he was now 3 months old.
Kelly and Billy went into the residential care unit. Deb kept in contact, but Kelly was often unhappy there, finding herself in a strange town, living in an institutionalised setting, and learning how to look after Billy without her usual support people. Billy was only in daycare two days a week, leaving her with limited time out. She wasn’t allowed out anywhere with Billy, even for a walk, and was not allowed any unsupervised time with him. Toni said that “it was like she was being watched rather than supported.” Kelly also felt that it was extremely restrictive.
Despite this, Kelly managed well at the residential house, but there was limited understanding of her disability, and she didn’t know anyone there. This resulted in things not being explained to Kelly in a way that was always understandable to her. Deb describes the type of communication and education Kelly needed:
“Putting it out there in black and white instead of using big language that she’s not always gonna understand, or even getting Kelly to repeat back to you, like you know, if you were trying to talk to her about something quite significant, I think it’s really important that you would [say] ‘so Kelly how do you feel, like what’s your understanding of what’s just been said?’ and things like that.”
“Why the hell didn’t they do that up there?”
After a number of months in the mother and baby unit, Toni, and Deb realised it wasn’t really working for Kelly. The residential unit staff were also becoming unsure as to if they could continue to support her. A transition plan was made that would involve Kelly and Billy returning to their home town and staying with Deb as an interim option.
Kelly’s supporters continued to advocate for her. The role of legal counsel was important, particularly Kelly’s own lawyer, who became convinced of the possibility of Kelly keeping Billy. The multiple people attending hearings to support Kelly was also useful at this time. Toni was asked to speak to the court, which she did, emphasising Kelly’s rights as a disabled person, and Billy’s rights to family life.
Planning was underway for Kelly and Billy to move back to their home town, when a new notification of concern was made by staff at the residential unit back at the Oranga Tamariki office who was holding the case. The notification brought forward the plan for Kelly and Billy to leave the residential unit.
Toni called Deb, asking if she would still be keen to take Kelly and Billy if the residential option was no longer tenable. The nature of the concerns were not shared with Toni or Kelly due to privacy considerations, even though they were being asked to take care of Kelly and Billy. Again, Kelly herself wasn’t told either.
Sometime later they discovered that that there was concern that Kelly had not checked the temperature of bathwater when giving Billy a bath, and had heated either a bottle or food up that was a little too hot, or not used the correct amount of formula. As Deb pointed out, these are all things that every first time parent does at some point with a new baby. In neither case was Kelly told at the time that these things were a problem, nor was there any effort to assist her to learn how to manage these everyday issues.
Deb gave an example of how there were simple solutions that could have been provided to Kelly, but weren’t:
“They were worried that she wasn’t measuring the formula properly and so I watched her a couple of times… so I went to Kmart and got one of those little containers that is divided into four and you put the scoops of powder into it… Why the hell didn’t they do that up there?”
Deb stated that ‘she might have spent a whole $5’ on helping Kelly this way:
“That was my thing, like you’re happy to say that [she’s not capable of preparing a bottle] but have you actually said to Kelly, ‘hey Kelly, we need to go to Baby City, whatever, and get one of these things because this is gonna help you.’
Kelly was able to learn what to do with just that small amount of support:
“There was, like maybe the first time that she used it, she hadn’t quite shaken all the [formula]. It wasn’t hard [to say], ‘hey babe, you need to make sure all the formula goes in. Real easy. The one and only time I said it.”
Deb agreed to become a temporary caregiver so Kelly and Billy could live with her on their return. At this point, Billy was 11 months old.
“I didn’t want him to be with anyone else”
When Kelly and Billy returned, her and Deb were instructed to bring Billy to the OT office to be ‘sighted’ and make a safety plan. They were both anxious as this seemed odd. When they went in to the meeting, they were told that there was a new ‘home for life’ option on offer. This came as a huge surprise to both of them.
They had gone to the office so that Billy could be sighted, but were then presented with a ‘home for life’ profile of the couple who wanted Billy. While they were at the office, Kelly was picking something up off the floor while holding Billy. Deb said to her “oh just watch his head babe.” The social worker said that the comment was another reason for concern. Deb said she just looked at the social worker and said “I would’ve said that if that was my mate.” To her it was just another example of how Kelly was unfairly judged.
Kelly and Billy continued to live with Deb, and there were various court reviews of the plan. They lived together for some time, and Kelly attended both Plunket education supports and her own counselling sessions in order to prepare for moving out with Billy. However, Kelly began to consider Billy’s needs as he got older, and wondered if she would manage on her own with an active toddler. She worried about being able to manage and was concerned about day to day safety issues.
Deb encouraged Kelly to discuss this with other support people, recognising that while she wanted to support Kelly, she wanted her to get her own independent advice due to her being the prospective carer and the potential for a conflict of interest.
Kelly felt trusting of Deb and noted that Deb had a really good bond with Billy. She knew that if she was to agree to Billy staying with Deb, that there would in effect, be an open parenting arrangement that would support her ongoing care of Billy. She suggested that Billy go to Deb in a home for life arrangement, but would only agree to that if it was with Deb:
“If Deb was not confirmed to be the caregiver I’d just continue to fight. But we always had every hope that she’d actually get it. I didn’t want him to be with anyone else.”
When Billy was about 16 months old, Kelly moved out to a flat nearby. She visits Billy and spends time with him at least twice a week, once at Deb’s house and once at his home day-care. They intend on continuing this arrangement with shared celebrations such as Christmas and birthdays as well.
What helped achieve this outcome?
Kelly, Deb and Toni all offered their thoughts on why this positive outcome – an open arrangement where Billy was living with someone considered whānau to both him and Kelly, and Kelly could have an ongoing close relationship with him – had been achieved.
Kelly’s key messages for policy and practice:
Having the voice and advocacy of support people to assist.
Being prepared for the kinds of questions OT might ask during an investigation.
“People need to be well prepared. Like I remember when they first came up to the placement [when I was first pregnant]. They put me right on the spot of what are my views of keeping Billy safe? I was kind of like put on the spot. … it kind of felt like they were kind of like rushing in and basing everything on my past.”
Encouraging other parents to self-advocate
Kelly was asked if she had a message for people who make policy and decisions about if babies should be removed or not. She replied that she didn’t have a message for them, but she did have one for the parents:
“Don’t give up. Don’t go out with, don’t leave without picking up a fight.”
Deb’s key messages for policy and practice:
The importance of a rights-based perspective for Kelly as a person with a disability:
“I just felt that they didn’t always treat her like a reasonable human being that has equal rights as you and I do.”
The importance of advocacy and information:
“Yeah it mortifies me but what also, mind you, Kelly’s always had me there but there was never any information given to Kelly like if you think you need an advocate.”
Toni’s key messages for policy and practice:
The need for a ‘cultural shift’ in child protection practice to a rights-based perspective for parents and children with disabilities:
“There is a huge need for a cultural and policy shift within Oranga Tamariki in terms of how they understand and respond to disability, not just for parents but for kids as well… [the] narrow focus really has terribly negative impacts on people who, you know, require support to participate in a meaningful way.”
Broadening the criteria for disability support funding:
“The current disability support funding arrangements are focussed on the person in terms of their disability support needs. It doesn’t… recognise or respond to the fact that disabled people are not just about their disability, they’re family members, they’re mothers and fathers, lovers, you know like. So in this case, the disability support assess need didn’t factor in Kelly’s life circumstances, like she might need an additional dollop of support to account for the extra time that she would need to understand some of the parenting stuff”.
Adopting a broader approach to practice focussed on support and capacity building, rather than a narrow punitive one:
“It’s just having that broader lens I suppose instead of that punitive approach, a much more… capacity building approach that requires a lot of inter-agency kind of collaboration based on wellbeing of all parties.”
Challenging outdated beliefs about disability:
“I think the biggest thing in this situation was the lack of understanding about disability support, yeah and the fact that there were assumptions based on the attitudes towards intellectual disability… So really serious decisions made that have lifelong effects on parents and children, they are outdated, and unfounded beliefs and attitudes about intellectual disability… It’s seen as a risk factor full stop, without considering, you know, what are the layered supports or arrangements that might [be needed]? … It’s the fact that the relationships and the bond can endure.”