Housing and Social Care Advice
At MND Scotland, we know that a diagnosis of MND can affect every part of your life.
Often, changes in housing and care needs can feel the most unsettling and difficult to manage. Things which were once independently managed can suddenly be in the hands of others, and we know that this can be challenging – especially if there are delays or disappointing decisions to contend with.
We also know that people affected by MND should not have to deal with these challenges alone, which is why our National Support Advisers are here to help wherever possible.
Whether you are struggling to get adaptations to your home, or a care package which you feel meets your needs, our advisers will be here to advise, and, in certain circumstances, intervene. Our aim is to ensure that every avenue has been considered, with the intention of getting you a quick and successful resolution to your situation.
Even if they cannot intervene directly, our National Support Advisers will be able to signpost or refer you to the best alternative source of advice or support with your query.
Quite often, problems which arise regarding housing and social care are the result of local authority or governmental policies or shortages, and with such issues our advisers have little in their power to effect immediate change. However, we ensure our Policy Team are aware of these issues. They collate this information, and, where trends or patterns emerge, will highlight these at the most appropriate level. Knowing about the gaps that exist across Scotland helps us, as an organisation, to campaign for positive change for the MND community.
If you would like to speak with an MND Scotland National Support Adviser about a housing or social care query, you can ask your specialist nurse to make a referral for you, or you can self-refer using the form below.
Getting an assessment for adaptations to your home
Homeowners
If you need changes to make your home more accessible and comfortable, your MND clinical nurse specialist can refer you to a local authority occupational therapist for an assessment of need. This assessment will look at any current or future barriers to living comfortably at home. The occupational therapist will then recommend solutions, such as aids and adaptations, to help overcome these barriers. Support may be provided by your local authority on a statutory basis, while other items or work may require a financial assessment. This could mean you need to contribute towards the cost or pay for it privately. If your needs have changed since your last assessment, you should request a reassessment.
Tenants
Tenants follow the same assessment process as homeowners, but there may be extra factors to consider when a rented property needs adaptations. For example, adaptations may involve significant or permanent changes to the building, which the landlord may not agree to. If your current home cannot be adapted to meet your needs, you may need to consider moving to suitable alternative accommodation.
Our National Support Advisers can give guidance if you are facing excessive delays, or if you are unhappy with the outcome of an assessment. They may also be able to offer advice about finding alternative accommodation. Please get in touch if this is the case.
Funding from a local authority for adaptation work
Local authorities can sometimes provide funding (called ‘disabled facilities grants’) to help householders cover the cost of getting certain larger home adaptations in place.
Council budgets which cover these grants can often run out before the tax year is complete, or there may be other reasons why funding has been delayed or refused. Please get in touch to speak with our advisers if you are having difficulties accessing funding towards adaptations.
Planning permission or building warrant delays
Sometimes, home adaptations require permission or a warrant from the local authority before work can commence. As the application process for these can be lengthy, it can cause further delay to getting adaptations in place.
It may be possible to expedite applications, so you could consider contacting the occupational therapist or social worker who approved the adaptations to see if they can assist in this way. Our National Support Advisers can advise, too, if you feel you need further support or guidance.
Finding alternative rented housing
If you are unable to adapt your existing property, you may need to consider moving home. We know that finding suitable alternative accommodation within the rental sector can be incredibly difficult. Stocks of ground floor, or lift-accessible properties are scarce.
Those with an MND diagnosis are usually determined to be in priority need by housing associations, but there are likely to be other applicants who also meet the same criteria awaiting allocation, causing lengthy waits.
It can be helpful to keep your search area as broad as possible, and to register applications with different housing associations, as this will increase the opportunity for allocation of suitable accommodation. The Scottish Federation of Housing Associations website has a search function where you can identify registered social landlords in your preferred area/s – https://www.sfha.co.uk/our-members
Your MND clinical nurse specialist might be able to provide evidence to help bolster your application/s.
Our MND Scotland National Support Advisers can help advise you with a housing query. They may also be able to provide a letter of support to add to the evidence accompanying your application/s. Please get in touch if you would like assistance.
Getting an assessment of care needs
If your MND symptoms are progressing, you may decide that you need further support to manage your self-care or other needs. Local authorities have a statutory duty to assess care needs and provide social work services. In Scotland, personal care provision for those with a progressive condition like MND should be free.
If you feel you have care needs, your MND clinical nurse specialist can refer you to your local authority so that a care assessment can be requested. Please speak to your nurse in the first instance.
Sometimes, though, there can be delays in having the assessment following a referral. Again, we would recommend you speak with your nurse in the first instance, to get things moving more quickly, especially if your needs are changing rapidly.
The care assessment should cover five key areas – your daily living and independence, health and wellbeing, your safety and risk, your social situation (including your housing and unpaid care support), and your personal outcomes (what matters to you and what you want to achieve).
Usually, only those deemed to have urgent or substantial need following the assessment will receive funded social care. Unfortunately, a diagnosis of MND does not, on its own, lead to a determination of urgent or substantial need, and, as a result, there are times when the outcome of an assessment does not match up with expectation.
If you experience problems in getting a care assessment (or reassessment), or with the outcome, please speak with one of our National Support Advisers to see if their support or guidance can help.
Issues with care provision
Often, once a care package is in place, the additional support can make a hugely positive difference, both for the person with MND and their family.
However, there are sometimes concerns around the consistency or quality of that care.
Systemic pressures within the care sector can mean that there is a high turnover of staff, leading to inconsistency in the carers assigned to your care, which can feel daunting. We often hear that carers have limited understanding of MND itself, and of its unique care requirements, which can cause further worry.
Please do raise any concerns with the manager of your care provider – they have a duty to listen and resolve anything within their power. If you have an occupational therapist or social worker involved, they, too, may be able to help.
If you have tried these options and your concerns remain unresolved, please get in touch. One of our National Support Advisers will do everything they can to help.
Find out what benefits you’re entitled to
Please fill in this form to let us know you would like to speak to one of our National Support Advisers. Within ten working days, the adviser will be in touch to arrange a convenient time for an appointment.
Alternatively, you could ask your MND clinical nurse specialist to make the referral for you.
Please note: All questions marked with an asterisk (*) must be completed before submitting your application.
