DISABLED ACCOMODATION

Application for funding for Independent Living.

Megan Cairns

 

1. 1.   Megan Cairns dob 07/10/96:

Megan is a lively young girl currently looking forward to celebrating her 16^th birthday with family and friends. Megan is physically disabled and her condition is moderate to severe cerebral palsy resulting from a premature birth and associated problems. She is unable to walk and relies upon a powered wheelchair for her mobility. She is a determined individual and now constantly seeks opportunities for independent space on her own or with friends but generally away from her parents upon whom she is completely reliant for her 24hour care needs. 

 

1. 2.   Purpose of this application for charitable funding for Megan:

The purpose of this application for charitable funding is to seek financial support to assist us as a family to create a predominantly independent living environment on the ground floor of our home to meet Megan’s developing needs for today and into the longer term future. The plan has been drawn up and designed with professional advice and will hopefully see an end to the continual and costly rounds of “knee jerk” spending that have occurred as we have attempted to meet and cater for Megan’s growing and changing needs.

Megan’s home environment is currently unsuitable and fails to meet her needs and essential requirements as a teenager seeking to maximise supervised independence. The validation that we have for this acute need to improve Megan’s physical home environment is as follows:

• To respond to a “Prioritisation Needs Assessment” undertaken in our home on 20/02/12 by the Occupational Therapy Service, Birmingham City Council that has indicated the following issues, adaptations and modifications required going forward:
  • A categorised “Need” banding of 3 (the highest level)
  • A recommendation for “ground floor living” for Megan  with wheelchair accessibility throughout the property (which is currently impossible)
  • That Megan’s home layout is currently not physically conducive for her everyday living and psychological needs now and into the future
  • That Megan’s existing first floor (upstairs) bedroom which is serviced via a through floor lift is no longer suitable due to space limitation and accessibility
  • That currently Megan is totally reliant on her parents for all aspects of her twenty four hour care needs which is a labour of love but limiting for all concerned
  • That Megan now needs to be allowed to develop, practice and apply her “Independent Living skills” in her own sustainable environment

 

• To respond to the  “Prioritisation and Assessment Pointing” element of the Priority Needs Assessment which again indicated needs at the highest level of 3 (need) as necessary for Megan:
  • Internal access in and around the home on the ground floor whilst sat in and using her powered wheelchair
  • The need for qualified Carers to provide input into her care provision to assist and support Megan’s parents
  • A reduction in the high risk indication of health and safety breaches posed by the existing care environment

 

• Adaptation of the family home to provide appropriate space for specialist provision that will mean areas of the home specifically adapted so that she can use them independently: Kitchen, Bathing facilities, IT Area, garden etc. and equipment to enable Megan to improve her independent living skills for her future life

 

• To create an environment where the family are able to access Care assistance in a safe environment without risk to any carer due to an inappropriate working situation

 

• The plans and scale of the work to be undertaken is significant. It has been formally reviewed and discussed with the Independent Living Team, Birmingham City Council in conjunction with the Occupational Health Service, Birmingham City Council and Approved as a “Preferred Option” for the full allocation of a “Disabled Facilities Grant” and an Implementation Officer has been appointed

 

• The plans for the works have been drawn up by an appropriately qualified architect following lengthy consultation and have been submitted for planning and building regulation approval which has been conditionally granted.

 

• The estimated cost of the works (plus contingency at 20%) to be undertaken are significantly in excess of the full provision available through the “Disabled Facilities Grant” that has already been agreed. Due to other financial commitments and previous spending on equipment and adaptations the additional funding required are not available from within the families financial means.

 

 

1. 3.   Aims of the project:

As a registered disabled person with a “Statement” Megan wants to achieve her full potential by developing her life skills within her sphere of ability now and going forward into adulthood. The purpose of the large scale adaptations to our home is to create an environment fit for Megan’s long term accommodation needs. They are clearly endorsed by Birmingham City Council and designed to:

• Address the requirements and recommendations of Megan’s Priority Needs Assessment also taking into account the UK Government standards required in the revised 16 “Lifetime Homes Criteria”, July 2010
• Meet Megan’s personal development, social and care needs as she grows and develops from teenage into adulthood
• Create appropriate independent living space for Megan within her family home environment where she can enjoy safe independence within the confines of her disability
• Re-accommodate Megan downstairs to the ground floor for single level living providing appropriate safe adapted space on one level for her to live a more fulfilled life.
• To enhance and maximise her independence by using appropriate bespoke adaptations within her living areas. Identified appropriate provisions for her personal disability would include the following:
  • Bedroom with track hoist system for bed and bathroom transfers
  • On-suite bathroom with large wheel- in shower, washing and toileting facilities with Lifetime Homes compliant turning circle and space for 2 carers intervention
  • Appropriate and adapted kitchen space with a rise and fall kitchen work surface and sink facilities to provide an area for preparation of simple meals with minimal supervision of her carer
  • Appropriate space for a computer and other IT equipment with a rise and fall work station suitable for both her independent use and supervised studies particularly during her current GCSE’s and future Sixth Form study.
  • A safe and accessible garden/outdoor living space to allow Megan to pursue her passion for nature and outdoor living.
  • To provide an accessible family living space where Megan can socialise and interact with her family and friends without the confinements of her current living environment

 

1. 4.   Background:

Megan’s was born on 7 October 1996 12 weeks premature and her condition is the result of her untimely birth at 27 weeks and 5 days pre-term as a result of a pre-eclamptic condition suffered by her Mother and although Megan had no pre-birth defects she unfortunately did not continue to thrive whilst in the Special Care Baby Unit at the Women’s Hospital in Birmingham.

Further, as a result of her many lung collapses and oxygen deprivation Megan suffered global brain damage resulting in a condition called Periventricular leukomalacia which manifests its self as Cerebral Palsy.

Megan’s Cerebral Palsy predominantly affects her physical mobility in terms of her physical ability to lead a normal life. Although slightly slower than her normal 15 year old peers, she is very articulate and age appropriate with her cognition and learning as she is currently in year 11 at school and preparing to take GCSE’s in the summer of 2013.

Apart from her physical disability she is a “normal” teenager who enjoys all of the usual things that an able bodied teenager would want to do. These things are currently limited by the lack of appropriate space; therefore the adaptations planned will simply enable her to experience normal teenage pursuits

Megan is very self-willed which is challenging for her as her Cerebral Palsy affects all of her four limbs and her overall trunk control. As a permanent wheelchair user she prefers to use her powered chair. This maximises her control over her living environment but is currently limited within the home due to a lack of accessible space. Megan is determined to achieve as much for herself as possible, this is likewise being limited by her home surroundings as she has to have help to manoeuvre her wheelchair anywhere in the house and there are parts of the hose that she cannot get into at all even if we try to man handle her wheelchair which is what we mainly have to do. Megan’s equipment grows to meet her physical needs and this simply exacerbates her frustrations often to the point of tears which is heart breaking for all of us..

As a family we are currently trying to create an innocuous and more independent home environment for Megan and notwithstanding the validation indicators to make the changes to our home as detailed above it is also important to reference that:

• Megan gets very frustrated and occasionally depressed because of the non-existence of space where she is able to spend some time in a room on her own or with a friend watching TV or listening music
• Megan’s independent movement around her own home is restricted by the size of her wheelchairs which are now too large to manoeuvre freely with the restrictions of door frames, furniture and turning circles being impossible to negotiate
• Megan would like to have friends around to the house both able bodied and

Disabled friends but this is likewise impossible within her current environment.

As parents of a disabled child It is our duty to encourage and provide the appropriate environment for her to thrive and maximise her full potential. We are passionate that we nurture this endeavour as Megan continues to display her desire for independence in a controlled environment.

It is therefore a decision not taken lightly to completely re arrange the living space of our home. Within the plans to accommodate Megan the family loose both the lounge and dining room to best accommodate Megan on the ground floor with a sizable bedroom and on suite bath room. The completion of the re design sees the creation of an open plan living space where the family can share an accessible living area.

This plan will create a home where Megan can achieve as much physical independence as possible whilst still having access to the required support within a controllable environment. Her parents are very aware that they need to be able to extend her care/support system to include external assistance so that the family remain safe and healthy and that we provide a better and more balanced package of care for Megan going forward.

 

1. 5.   Why there is no available funding for the project:

As Megan’s parents we have previously taken full responsibility for seeking additional input and therapy for Megan’s condition, carrying out home improvements or alterations and the provision of equipment previously recommended by Occupational Therapists or other health professionals. Such items have included the purchase of a specialist wheelchair @ £21000.00. The down payments on accessible vehicles, the purchase of exercise equipment an adapted wheelchair bicycle to name but a few. This has led to the erosion of any savings.

Robert Cairns my husband was forced to retire from a career in the police service 3yrs ago due to crippling arthritis in both knee joints and currently only has a small income from the pension scheme. The condition is currently controlled by prescription drugs taken both orally and by injection. Replacement of the joints is currently not an option as he is considered too young for the procedure. He is now also registered disabled but cares for Megan every day.

For myself I have spent many years working as a self-employed consultant and have only recently returned to a salaried position within the private sector to provide some financial stability to our families’ income. These circumstances have put considerable financial strain upon our family and we are only currently just making ends meet.       

 

This now means that the required alterations outlined above in 1 and 2 which have been extracted from the most recent Prioritisation Needs Assessment (20/02/12) for Megan’s appropriate living environment now are far in excess of our available finance.

The home is subject of a mortgage and jointly owned by both parents.The household income has been greatly reduced whilst outgoings continue to increase. For these stated reasons the family are now seeking charitable funding to support this project.

Due to the circumstances outlined the opportunity of moving to a more suitable home although considered is not viable option. We are therefore left with the only option being to alter our existing home.

As outlined above we now consider the family to be in “financial hardship” with no possibility of self-funding the shortfall in the budget required to complete the planned work required to our home within a realistic time scale. The decision to seek a complete solution for Megan’s needs is understood to be the most appropriate option because of the assessed “risk” of our current circumstances. A phased solution would not deliver the reduction of risks in a timely fashion.

As Megan has grown older her physical size dictates 2 carers and the use of a hoist to complete her care. Megan’s home environment at this time will not accommodate 2 carers and fails the risk assessment process for 2 carers to work within it again because of the layout and space restrictions that currently exist.

We as Megan’s parents both work full time although we have only the one salary. Dad is currently working to set up a business within the confines of his disability but currently earns no salery. We juggle Megan’s 24/7 care needs around our work. As the family home is no longer considered a safe working environment for professional carers to work in we share the weight of Megan’s care and we continue on at this time without appropriate support.

Changing and adapting our home environment as described would make Megan’s life much happier and would give us more time as a family together as we could share the enormity of Megan’s care with others who are trained to help us.

This plan may appear to some as as excessive in its planning however in reality it will simply provide a suitable living space for Megan to develop into adulthood where we can accomodate wheelchairs for Megan and her friends to move about unaided. An independant living space.

The Local authority have agreed in principle to a grant of their maximum permisable amount of £30.000 towards the project which has been costed by the council approved building contractor at over £80.000. We will now obviously begin the process of cutting costs but the reality remains we are about £50.000 short of making this plan a reality. The work can unfortunately not start until all the funding is in place.

Thank you for taking the time to read our plight. You will understand that we are also seeking charitable funding from other organisations and can promise that in the unlikely event of any over funding it would be returned to individual doners first on the basis they would be able to help others they identified as worthy causes.