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Comprehensive look at Muscular Dystrophy Canada Services in Ontario

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Muscular Dystrophy Canada offers a wide range of services and programs. We are committed to improving the lives of people with neuromuscular disorders.  Services differ in range throughout each region, so while different programs are varied depending on the area, each team of Services staff is dedicated to providing the best support, advocacy, information, education and equipment we can. The following comprehensive look at Services is from the perspective of an Ontario staff member and shares all the many advantages that Ontarians can have as a registered client with Muscular Dystrophy Canada.  Not all the listed information may be accurate for your region, please contact your Services staff to learn more.

Wow I can’t believe that summer is nearly officially over, and in a few short weeks fall will be upon us.  With September being National Awareness Month, what better time than to talk about Services and Supports offered through Muscular Dystrophy Canada in Ontario/Nunavut.

So first let me start my introducing myself, my name is Karen Dunbar and I have been employed as the Service Specialist for Ontario/Nunavut with Muscular Dystrophy Canada since October 2011.  In this position I have the opportunity to work with the service department and together we assist clients and those living with or supporting those living with neuromuscular disorders to live full lives with dignity, trust and respect.

Often I am asked what exactly a service specialist does.  Quite simply my answer is basically anything to assist our clients to get the supports, services and programs they need to the best of our ability.  In order to do this we need to focus on our five pillars which are:  education, equipment, advocacy, support and information.  We endeavour to assist clients find services, funding, supports, programs, etc. in their home communities.  In partnership with those affected by neuromuscular disorders we provide the necessary assistance to help address individual’s specific goals, and needs as well as seek the supports individuals and or their families require within the community.  We are here to listen, to assist in advocacy efforts and to assist

So if we look at the five pillars mentioned above, here is some of the assistance the Service team can provide.  First let’s discuss our equipment funding program.  Did you know that we can assist with the purchase of equipment by offering up to a maximum of $2640.00 towards each piece of needed equipment and or assistive device?  This program is open to anyone registered with Muscular Dystrophy Canada.  The steps are simple, complete a on line application found at www.muscle.ca, have an OT, PT or other designated health professional complete the section describing what type of equipment/assistive device is needed and why, then contact two different vendor’s to get quotes.  Once you have all information mail, fax or email it in for review.

Secondly Support which can include system navigation.  This can include assisting a client to find other sources of funding, apply for government support programs such as ODSP.  It can include helping a family complete an application for funding through Children with Severe Disabilities or Special Services at Home.  These are just a few examples.  We assist by offering support, this can include in community visits, support in finding a doctor or specialist, or clinic, different recreational services or in home health care as needed.  It can also include assisting a person to speak with their doctor or family around supports they need.  It can include assisting someone in getting appropriate supports through our local chapters or networking group or on line if the person is more remotely located.  We are only a telephone call or email away, and are willing to listen and help where we can.

Thirdly advocacy; this can include finding appropriate housing, a dietician or appropriate supports for a child or youth in school.  It can also include working with government to lobby for change.  It can include working with other community service providers to ensure you or your family are receiving the supports you need.  We continue to focus on assisting individuals and or their families to develop and or enhance their self advocacy skills by providing ongoing coaching and guidance so that needs are met on an ongoing basis.

Fourthly we offer support through education.  We have a comprehensive Muscle Facts Program that we present in schools to teach children about neuromuscular disorders.  This is a comprehensive program that covers everything from various disorders, to assistive devices, to acceptance etc.  It is individually developed for the specific school and child.  It is interactive, engaging and informative.  Not only do we offer this program for the youth, but also have one we can provide for the staff and administrators of the school.

And finally information sessions throughout Ontario.  These include guest presenters on everything from nutrition, exercise, respiriology, 72 hr emergency preparedness, wound care, self advocacy, financial planning and so forth.  These are open to service providers and anyone living with or supporting those living with a disability.  They are offered throughout Ontario at different times throughout the year.  The next one is scheduled for October 2012 in Sault Ste Marie, Ontario.  If you live in or around this area please contact me for location, date and topics to be covered.

We also support the Chapters by assisting in planning different presenters at their monthly meetings as requested by the members.  If you are looking for an afternoon or evening where you can meet other people who are living with or supporting those living with a neuromuscular disorder why don’t you check out one of our chapter groups.  Currently we offer chapter meetings monthly in Toronto, Ottawa, London and Windsor.  We also offer a Parent Child Networking group in Hamilton.    It is a great place to meet other families and access presentations on various topics from summer camps, to physiotherapy to government programs that offer support.

As you can see, we in the services department are very busy with education, information, equipment, support and advocacy.  Hopefully I have provided a little glimpse of all the supports and services available, however as always we would love to have the chance to speak to you.  Whether you need system navigation support, equipment support or just support or information in general we would love to help.  If you would like to contact us please feel free to call us at 1-866-687-2538 ext 160 or locally at 416-488-0107 or email me at karen.dunbar(at)muscle.ca.

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