MDI Youth and Respite Support Services

MDI Youth / Respite Support Service Team

MDI Youth / Respite Support Service Team

The respite service is an essential support for people living with muscular dystrophy and their families. Support is coordinated by the Respite Coordinator, in conjunction with the Family Support & Clinic Coordinator.

MDI Respite Services are categorized as follows:

1. MDI Youth Respite
2. MDI Emergency Respite
3. MDI PA Respite
4. MDI Financial Contribution

Respite Expenditure Table

MDI Definition of Respite

Respite care is short-term care that helps a family take a break from the daily routine and stress. Respite care can occur in the person’s / family home or in a variety of out-of-home settings, and can occur for any length of time depending on the needs of the family and available resources. MDI recognises that the person / child with muscular dystrophy and family members both need to avail of respite care services in order to maintain physical health and emotional wellbeing.
As you can see from the table, MDI continues to prioritise and fund respite each year. Respite includes summer camps, emergency respite, personal assistant hours, breaks provided in the home, social activities and transport.

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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