What do families want from Scope?

Lola_Scope

We would like to know what families need from Scope so we can plan to meet those needs. Please select from the list of suggestions below and/or add you your own suggestion at the bottom.

Pinks1972

Hello everyone hope Ur all keeping well 😊, but I have moved into a bungalow due to ill health but I can't afford carpet for my living room and hallway, I have lost feelings to both of my legs and feet from the knees down and trying to keep my feet warm is hard and now we going into winter really worries me so how can I get help with this please. Many thanks

Lola_Scope

Hi @Pinks1972,

Thank you for getting in touch. This is not my area of expertise but you can check what support is available on the government’s Help for Households website.

Our website has information about help with gas and electricity bills. 

You can also contact our Disability Energy Support Team on 0808 801 0828 for help managing your energy costs.  

I hope you will be able to stay warm this winter.

Rachel8

How to support my child

https://forum.scope.org.uk/discussion/123014/what-do-families-want-from-scope

would like to meet other children: families.

Lola_Scope

Hi @Rachel8,

Thank you for responding to our poll. Your response will form part of the feedback that informs future plans. Also, by posting here and you have already taken and important step towards networking with other parents.

Feel free to provide some additional information on the main families page. You could perhaps ask the community for recommendations for disability specific groups. There is a lot of knowledge to draw on. You can also Google your “Local Offer”. This should have information about what opportunities are available to you locally. Some areas are better than others but every area should have something to offer and it’s a good place to start as there are often links to other resources. 😊

orangeapple57

Encouraging independence

Unfortunately only one of these options is viable for someone with Eds whilst we suffer many years without a diagnosis. Diagnosis only brings with it vindication as one can only manage deteriorating. In my case I have been denied the only form of treatment as in this County no physiotherapy is available for anyone with a chronic health condition which is counter productive to the condition which deteriorates over time and which can only be reduced or slowed through physiotherapy and management. My daily struggles there for a mount to fighting constantly for independence support and what is awarded by the Equality Act of 2010 however because there are no known establishments as watchdogs for this law, I find myself being a full-time solicitor every single day fighting for equipment grants justice. Therefore my main source of angst is in The pursuit of justice.

vikki66

Other (please state below)

@orangeapple57

Sorry to hear this. There are so many different illnesses and disabilities where sufferers have to exhaust themselves fighting for what is supposedly their rights. It’s awful.

I’m sorry to hear that you have to fight for justice, but I admire your tenacity in doing so. So many people give up.

Stay strong

travisparker

Families need comprehensive support following diagnosis, including resources for managing well-being and behavior. Encouraging independence is also crucial, as it fosters confidence and self-sufficiency in children.

Lola_Scope

Welcome to the community @travisparker and thank you so much for your response it’s much appreciated 🙂

Lola_Scope

Thank you so much to everyone who has responded to our poll so far. We’d be very interested to know any more information you’d like to share. For example, what specific support do feel is needed following diagnosis. Do parents want help supporting their child developmentally, educationally, social or in another area. Would parents also potentially benefit from specific help supporting an LGBTQ+ disabled child?

reachstate

Managing my wellbeing

As we collaborate to advance in our respective fields, I also share a personal challenge. The burden of family debt taken on health grounds has become increasingly overwhelming on me as a young undergrad and constraining my academics, with interest  accruing daily.

Thank you for considering how you can support me during this time through shared resources and networking. I look forward to our continued partnership in building a brighter future, both personally and professionally.

Rachel_Scope

Hi @reachstate. Thanks for your answer. Do you have children yourself or are you referring to debt within your family?

reachstate

Managing my wellbeing

@Rachel_Scope Thank you for your response and concern. I'd like to clarify that the debt I mentioned is related to financial responsibilities I undertook while caring for my sick parent. As a student from a modest background, I faced unexpected expenses that necessitated borrowing temporarily. This debt burden is borne out of familial obligations and the absence of financial support or subsidies.

It'It'It'It's a challenging situation, I appreciate your understanding.

Rachel_Scope

Thanks for clarifying @reachstate. That must have been very difficult for you and it's admirable that you looked after your sick parent.

This particular poll is aimed at those with disabled children, however, your experience has been noted and I will pass it on to the rest of the organisation as something that we could possibly help people with in the future.

reachstate

Managing my wellbeing

@Rachel_Scope iI willI be glad if this leads to helping someone with similar challenge in the future. I empathize with parents caring and loving their children however nature has brought them forth. HaveHave a beautiful evening.

cartha

Finding support following diagnosis

Access to legal advice would be very helpful. I've been in a situation where I needed legal advice, just a lawyer to talk with for an hour or so, but there's been no help where I live. I even offered money at one point but none would help me, and they would not give a reason. I live in the Welsh outback where services in general are not very good, and have been getting worse over the past few years.

Community_Scope

Note from the online community team.

Just a reminder that this poll is for families with disabled children. We have begun a new discussion that discusses more broadly what our members would like from Scope, which you can find here.

https://forum.scope.org.uk/discussion/123619/what-do-you-want-from-scope

vikki66

Other (please state below)

My child (ASD/ADHD/LD) has experienced a lot of challenges around dysregulation since hitting puberty. He’s not been able to attend school for over a year, and barely leaves the house. His dad was literally at deaths door, but had surgeries (including organ transplant after rejection). I’m worn out, as I split with my son’s dad (during the difficult years when you have to struggle to be see specialists in order to be diagnosed), but still try to care for him as he has nobody else (he also has ASD as well as physical disabilities since early childhood. He lives nearby, on his own). That’s just the tip of the iceberg we’re contending with. My own health doesn’t get a chance to enter the picture ever (I’m not moaning, as that’s how it often is for parents/carers).

I guess I’d appreciate meeting parents, struggling or not.

ANj53j77

Other (please state below)

Adult support

Albus_Scope

Thanks to everyone who's left some feedback, apologies if the team haven't been able to reply to everyone, but you've not been forgotten about. ❤️

I can definitely empathise to some degree @vikki66 life is tough enough for young autistic kids, even without so many other factors life is throwing at them. Have you looked into any local support groups to meet other parents in the same position?