Housing and Assistance with Activities of Daily Living
As you move from adolescence into young adulthood, you should explore desired levels of independent living, as well as the resources and supports needed to facilitate optimal independence. Activities of daily living are supported by family members when you are younger, but as you mature, it is more common for you to begin to enlist caregivers from outside the family. Teaching assistants at school can provide assistance with hygiene, meals, transfers, as well as healthcare interventions. Home care agencies can often provide licensed services for more advanced healthcare needs. Please ask your neuromuscular team what services are available for teens/adults living in your country.
As a result of the complex and often fragmented nature of disability benefits systems, you may require financial counselling and understanding that is above and beyond that required of those without disabilities. Your neuromuscular team, particularly social workers, will help educate you and your family about national social support systems. Patient organisations and Citizens’ Advice can also help with this.
If you are thinking about living independently, there are some options you may wish to consider:
- A residential setting may include living in a family home, living on campus during academic studies, in group home or organised facility, or in a home or apartment with or without a roommate
- Home modifications and accommodations may be needed for accessibility (consult with experts, understand laws and rights, financial resources, assistive technology options). A disabled facilities grant and other help may be available. Factsheets on these are available from https://www.musculardystrophyuk.org/
- You may need assistance with personal care and activities of daily living (hired personal care advisors, family care providers, availability of providers, funding resources, management and training of care providers)