Cut the Red Tape
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Submit your question below to CUT THE RED TAPE! and your question with an answer might appear here. New Q&A's are posted each week.
My child uses a wheelchair for mobility and we need a ramp for our home. Are there any guidelines for how to build one ourselves? Where can we purchase a ready-made ramp? Is there such a thing as a portable ramp? Are there any resources for financial assistance?
What’s a good response to the statement, “Call me if you need me?” Despite the fact that family caregivers are drowning in responsibility or are really confused about what the next step ought to be, they often respond “no thanks” when help is offered. (Respite, advocacy, and support)
Asking for and accepting help is a complex issue. Obviously you first need to admit that having some help will make a real difference in your loved one’s quality of life, and therefore yours as well. Then you need to define what help you need. Which tasks or chores would be the easiest to ask others to do? Which do you really want to do yourself? And which, if any, can you afford to pay others to do? If this just sounds like more work, know that it doesn’t have to be an overwhelming task but rather just a way to organize the thoughts and information you already have. Ready to give it a try?
Our family needs a wheelchair accessible vehicle, but I don’t know what type of vehicle is best for us, where to find new or used vehicles, what kind of adaptations are available, and how to pay for everything. Where should I start?
My doctor ordered some equipment for me/ my child, but it will take months to process the paperwork. In the meantime, is there a way to borrow the equipment that we need? Are there “loaner” wheelchairs available while ours is being repaired? What kind of equipment might be available for me/my child to try out before we pay for Durable Medical Equipment? Where can I donate equipment that we no longer need?
My child has disabilities and medical needs that are related to his Mito. Can he still go to summer camp?
My daughter, age 7, has Mitochondrial Myopathy, confirmed through DNA studies. Her disabilities include developmental delays, failure to thrive, exercise intolerance, severe muscle weakness, and generalized fatigue. Her disabilities are “invisible” and she receives all her medical care on an outpatient basis. Her specialist made a comment that if you had a permanent disability you should be eligible for Medicaid that helps pay what your insurance doesn't. I have looked into social security and medicaid and absolutely everyone says they are income based. Is there or is there not a program to help disabled kids and hardworking families that don't fall into that poverty level?
Texas Mom.
I have a friend who lost a child to Mito, and I'm not sure how to support her this Christmas season. I don't want to hurt my friend's feelings by mentioning the child and including her in things like Christmas cards, or on the other hand I don't want to hurt my friend by not mentioning and including the child. How do I handle this, now and for future holiday seasons when the loss is less immediate?
Lin in Mass.
I have mitochondrial disease - am I eligible for social security disability insurance, and how do I apply?
My child has mitochondrial disease but loves bikes, trikes and things that GO!
I've heard that as much as 70% of all SSDI applications are denied the first time they are submitted. Is there anything I can do so that my application has a better chance of being approved?
About the Red Tape Advocate:
Heidi Martin-Coleman is a self-employed Disabilities Consultant. She combined her nursing and education degrees while working as a Developmental Nurse Educator for several years, even acting as Service Coordinator for a child with Mito. Heidi's youngest child was diagnosed with Mito as an infant, which led to testing other family members and the discovery of a mtDNA defect. Heidi and her eldest were then correctly diagnosed following over a decade of misdiagnoses. Sadly, Heidi's youngest daughter passed away a week before her third birthday. Coincidentally, this was in September 2005, during the first Mitochondrial Awareness week. Heidi has the unique perspective of experiencing Mito as a clinician, parent, patient, and now returning full-circle as a consultant and advocate. Heidi lives in Western Mass. with her husband, two children, and service/hearing dog, Mercury.