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Survey on the Cost of Disability

October 28th, 2020

Cost of Disability Survey

Have your voice heard by taking part in a survey on the Cost of Disability

Last week a survey on the Cost of Disability was posted to a random sample of over 33,000 customers in receipt of relevant disability payments, as well as a survey specifically designed for the over 1,000 customers in receipt of Blind Pension. You can complete the survey online if you didn’t receive a postal copy or prefer to fill it in online.

As you may know, Indecon International Consultants has been working on a report on the Cost of Disability which was commissioned by the Department of Employment Affairs and Social Protection (DEASP). Disability Federation of Ireland has been highlighting the extra cost of disability for years and calling for a package of supports. The survey is thus a crucial opportunity to provide evidence to support these calls and for people with disabilities to document the many extra costs they live with on a daily basis to inform future supports and policy. So, it’s really important that as many people as possible complete it. We encourage you to take part in the survey!

All responses are completely anonymous. The deadline to complete the survey is Monday 16 November 2020. If you have any questions on this you can call the DEASP survey helpline on 01 704 3029 or email CODSurvey@welfare.ie. Alternatively, Indecon can be contacted directly at boconnell@indecon.ie or rotoole@indecon.ie.

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Categories: Studies

1. Muscular Dystrophies

  • Becker muscular dystrophy
  • Duchenne muscular dystrophy
  • Manifesting carrier of Duchenne
  • Congenital muscular dystrophy - General
  • • MDC1A (merosin-deficient congenital muscular dystrophy)
  • • Rigid spine syndrome (RSS)
  • • Ullrich congenital muscular dystrophies
  • • Bethlem myopathy
  • Emery-Dreifuss muscular dystrophy

2. Myotonic Disorders

  • Congenital Myotonic Dystrophy
  • Myotonia
  • Myotonic Dystrophy

3. Congenital Myopathies

  • Central Core Myopathy
  • Minicore (Multicore) myopathy
  • Myotubular or Centronuclear myopathy
  • Nemaline myopathy

4. Mitochondrial Myopathies

  • Mitochondrial Myopathies

5. Metabolic Disorders

  • Metabolic disorders (general)
  • McArdle’s Disease
  • Pompe’s Disease

6. Periodic Paralyses

  • Periodic Paralyses

7. Autoimmune Myositides

  • Polymyositis, Dermatomyositis and Sarcoid myopathy
  • Juvenile dermatomyositis
  • Inclusion body myositis

8. Spinal Muscular Atrophies

  • Severe (Type I)
  • Intermediate (Type II)
  • Mild (Type III)
  • Adult spinal muscular atrophy

9. Hereditary Motor and Sensory Neuropathies

  • (Also known as Charcot-Marie-Tooth or Peroneal muscular atrophy)

10. Disorders of the Neuromuscular Junction

  • Congenital myasthenic syndromes
  • Myasthenia Gravis

11. Friedreich’s Ataxia

  • Facioscapulohumeral muscular dystrophy
  • Limb-girdle types of muscular dystrophy (LGMD) - General
  • • LGMD 1B (also known as Laminopathy)
  • • LGMD 1C (also known as Caveolinopathy)
  • • LGMD 2A (also known as Calpainopathy)
  • • LGMD 2B (also known as Dysferlinopathy)
  • • LGMD 2I
  • Ocular myopathies including ocularopharangeal muscular dystrophy

12. Other (Please Specify)

13. Unspecified