 
 Society for Mucopolysaccharide © 2009
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  Advocacy Support Case Studies
Names have been altered to protect identities. Katie and Achieving DLA Teresa, the mother of Katie, a ten year old with Sanfilippo disease from Scotland contacted MPS in May after Katie’s DLA benefit was reduced. Teresa was upset and angry that the Benefits Agency had assessed Katie’s mobility as having improved whilst it had in fact deteriorated. Katie was now stumbling and falling and would often ask to use her wheelchair. Teresa was supported to write a letter to the Benefits Agency requesting a reconsideration of their decision. In July Teresa received a written explanation of the Benefits Agency’s decision and that week MPS wrote a detailed response advising why the decision was disputed. Two weeks later a very relieved Teresa, who said she could not have achieved this without MPS’s support heard that the Benefits Agency had decided not to proceed with an appeal having accepted that Katie was entitled to the highest rate DLA. Shazia and Nazir - Clinical Management and Housing In June MPS attended a housing meeting to agree the final drawings for adaptations desperately needed because of their physical disabilities to Shazia and Nazir’s East London home. Shazia is 19 and her brother 8. They both suffer from MPS I Hurler Scheie Disease and live with their parents and 4 other brothers and sisters. This meeting was the result of over two years support from MPS, support which evidenced the discriminatory attitude of the Occupational Therapist (OT) who was shown to be responsible for the unacceptable delays experienced. The OT’s conduct was challenged through the Local Authority’s complaints procedure as was her inaccurate assessment that MPS I Hurler Scheie is not a progressive disease. A different OT was appointed and through continued support from the MPS Society –an accurate assessment of the family’s needs has now been made. Advocacy support continues to ensure the adaptations are completed in a timely fashion. Without MPS this family would in all likelihood have been neglected by the Local Authority as due to English being their second language they were unable to advocate for themselves and challenge their discriminatory treatment. Eliza's Transfer to High School Jane was very anxious about her daughter Eliza’s transition from primary to secondary school. Eliza is 11 and has had a BMT for MPS I. Jane was worried that the educational progress Eliza had made with excellent support at primary school would not be continued at high school. In consultation with Eliza’s parents MPS wrote to the Local Education Authority detailing an assessment of Eliza’s needs. In July support was given at Eliza’s transition review meeting. Her needs were advocated further as was the need for additional resources at high school to meet her physical and psychosocial needs. These resources were as a result of MPS’s support written into Eliza’s statement of special educational need, a document, which gives Eliza a legal right to this support. In an article for the MPS newsletter Jane wrote “Thanks for your (MPS’s) help getting Eliza into high school” Principles underpinning the advocacy support service |
