Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.


Saturday, November 24, 2007

Improving Health Care Coverage Including Home Care and Therapy

I've been asked to testify at a town forum sponsored by ARC and UCP on December 11th in Saint Cloud. I will be talking about Health Care Coverage Including Home Care and Therapy. Districts 14 & 15 policymakers (Sate of MN House Of Rpresentatives) will be present and it will be to them that I will be stating my case. I've put up my first draft. What do you think?

Good evening. My name is Sarah Rittmann and I live in Saint Cloud with my two young children, Sandis and Gracie. I first want to thank all of you for the opportunity you have given me to share with you the need for improvements in health coverage including home health and therapy options.

My son Sandis is seven years old. Sandis LOVES video games, plays hockey in the local youth league, and is excellent at mathematics. My daughter Gracie is four years old. Gracie is persistent, vocal and organized in all of her undertakings. I can understand that it may be hard to imagine a four year old being all of these things, but I also understand that you have not likely had the opportunity to meet my daughter! One thing that my two children have in common, despite their differences, is they both have disabilities and require varying levels of care to help them achieve the same level of independence that other children their age have. Gracie has cerebral palsy and type 1 diabetes and Sandis has an autism spectrum disorder.

My daughter has been involved in physical therapy and occupational therapy. My daughter’s disability is primarily physical so she also has many medical specialist appointments. Gracie, through the help of many interventions, has increased her skills and independence by a huge degree. Because of this she now only requires weekly occupational therapy, orthopedic supports, and her diabetes therapy regimen which consists of testing her blood approximately ten times per day as well as one injection of insulin per day.

My daughter receives Medicaid which is based on my income. In January of 2008 Gracie will lose her secondary Medicaid coverage as our income will no longer qualify her for this coverage. Usually an increase in income is met with happiness in a family. In my family, I have considered asking my job to decrease my pay. My daughter does not qualify for TEFRA coverage as she is not “disabled enough“ as has been determined by the State Medical Review Team. When my daughter loses her Medicaid coverage next year, our family will be forced to make some very difficult decisions regarding Gracie’s care and what therapies and interventions I will be able to continue. I do not believe it is ethical for families of children with type 1 diabetes worrying about how often they can afford to check their child’s blood sugars. I believe that Minnesota needs to take into account the needs of high medical-needs children with pre-existing conditions that may not qualify for a disability determination. Gracie deserves the increased mobility she gains from her orthopedic supplies, the best care possible for her diabetes, and she has a right to the therapies she receives that help increase her fine motor development. Families, also, have a right to these services for their children even if their commercial insurance will not cover them or they can not afford the copays and percentages they are required to pay for them. My daughter should not be denied her maintenance therapy which allows her to NOT be considered disabled simply because I cannot afford them and we are not poor enough to qualify for typical Medicaid

Sandis has a federal determination of disability so he receives Medicaid that is not based on my income. Sandis currently has occupational therapy twice per week. Sandis’s occupational therapy focuses on life skills. Sandis learns how to tie his shoes, how to act in public places, how to maintain focus on an activity he may not like, as well as many self-regulatory techniques that help him deal with frustrations and sensory input. Sandis also receives PCA services daily during the week that further helps him to complete all those things that you or I take for granted. Sandis learns how to clean his room, how to brush his teeth and bathe, how to handle frustrating situations, and how to sit at the table for dinner. All of these things that my son works on both in formal occupational therapy and with his PCA are fundamental to his independence now and also as he grows older.

Sandis’s personal care attendant is a crucial piece of his functional education. Sandis has been receiving PCA services since April of 2007 and in the past 8 months Sandis has had four different personal care attendants. He also was “between” personal care attendants for approximately 6 weeks of the first six months he was eligible for services. This means a few things for Sandis. The first thing it means is that during the time periods that Sandis is without a PCA, Sandis is denied his independence in his home routines. The second thing it means is that through the course of eight months, a child that is very bound to routine, has had to accept a new person approximately every other month into his personal routines and learn to incorporate this person into his life. There is a certain level of privacy and humanity that is lost when a child is submitted to a revolving door of personnel to aid him in things like bathing, toileting, eating, and behavioral regulation. There is also a certain level of trust that each PCA must achieve in order for Sandis to relax enough to allow them to truly help him in his routines.

I believe that it is important to not only ensure that children who need home therapy assistance are assessed and qualified for these benefits, but we also need to focus on and resolve the reasons behind the high-turnover in the direct support workers field. This high turnover intimately affects families, children, and individuals. Minnesota needs to continue to work towards providing optimum reimbursements for direct support services, and we also need to ensure that any increases in reimbursements are being reflected in the wages of the actual direct support workers.

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