Preserving Lives, Conserving Costs:  CDCS Works

A Campaign to Support Persons with Developmental Disabilities and Their Families
To Preserve Consumer Directed Community Supports (CDCS)

Sponsored by The Arc of Minnesota -- December, 2004

I would like to tell you a story about an
11-year-old boy named Martin. He is adorable, lovable, and has never done anything wrong in his life. He also cannot sit up, stand, walk, talk, or anything "normal" children take for granted. Still,
his life is full, and he is happy.

He was adopted by a family who loved him more than they could ever say, and, with the help of nurses three nights a week and four hours weekay mornings, they managed (though sleep-deprived). Then, during the first week of August 2004, they received a letter notifying them that their CDCS budget had been cut by $61,218.00. At approximately $8,000 a month in nursing services, he now had coverage for about four months out of the year.

Martin is extremely medically fragile, with over 30 major medical conditions. He is on oxygen 24 hours a day and, since he became part of our family over 11 years ago, he has never been out of our sight – always on a monitor or with a licensed nurse. The most important part of our life with Martin is keeping him alive. His pediatrician, though completely dedicated to his survival, has stated that he would not be surprised if he received a call at any time saying that Martin had died. For this reason, we have been diligent in our care of Martin.

Besides the fact that Martin can become seriously ill extremely quickly, he also has a severe sleep disorder. He needs regular repositioning, suctioning, oxygen adjustments, and arousing throughout the night to keep his oxygen saturation up and him alive. He could (and should) have a nurse every night, but this is the best we have ever been able to attain. We have to be extremely diligent to stay within our nursing hour budget as it stands, much less cut by over two-thirds.

The cut in our budget not only affects the entire family, but puts Martin's safety at extreme risk as well. The more nights we go without sleep, the more sleep-deprived we are, the slower we are to wake to his alarms, the greater chance that he will be in serious trouble by the time we get to him. Recently, after several nights without a nurse and no sleep, our 21-year-old daughter (home on break) was awakened by alarms which we did not awaken to, and Martin's oxygen saturation was dangerously low by the time she got to him. Had she not been home, we would have eventually awakened, but perhaps not in time. This budget cut would reduce our nursing to approximately one night a week. That is not safe. That is not responsible care.

I am only responding to the cuts as they affect our nursing situation, because all of the rest is inconsequential if Martin is not alive. The CDCS waiver has allowed us to hire our own nurses, train our own nurses, and use MRCI as the employer of record.

With Martin, this is vitally important, because it takes even the most experienced nurses months to become acquainted with him and his medical care before they are comfortable with him and competent to take care of him.

We have not used other waiver programs (like Community Alternative Care, or CAC), because an agency would be responsible for scheduling nurses and they could send us any available nurse for his care.  We know this is not a safe situation for Martin, because of his overwhelming complexities.  We have been in that situation several times and have had to resuscitate Martin when the nurse finally came to get us.  Martin is extremely attached to us, and therefore can do things that are dangerous to his life when we are not around. Approximately 99% of the time, we are in the house sleeping while the nurse is here. It has been over eight years since we have taken a vacation without Martin, because he becomes so ill if we leave him.

I quite frankly do not know what we would do if we lost our CDCS services. There is no possible way we can think of our lives without Martin, yet placing his life in jeopardy by sub-standard care is also out of the question.

It would be tremendously more expensive for the state of Minnesota to take care of him in any other setting, as he has been identified as needing hospital-level care.  We have kept him at home through the approximately three pneumonias he gets per year, illnesses where any other child would be hospitalized, most likely in the intensive care unit. He is only hospitalized with us when he needs to be ventilated, and that has only happened twice in his 11 years. However, if we did not keep him at home, the cost of hospitalizations throughout the years would have been enormous. We are able to do this, because I have clinical medical experience and my husband is an experimental pathologist. We have the medical background, but we cannot do it alone when his care needs to be one-on-one, twenty-four hours a day.

The CDCS waiver has allowed us to care for Martin in our home, as our child, in a family who loves him dearly. Without it, Martin will lose, we will lose, the state will lose, and nothing is gained. We are extremely confident that the cheapest way to take care of Martin is in our home with the current CDCS waiver. I know that is all the state is interested in. But we also believe that it is the best way, the most caring way, the safest way, and the only way that Martin will stay alive. That is what we are interested in.

I hope in some small way, Martin's story can make someone take a second look at what has been done to our family and others impacted by cuts in their CDCS budgets.

Kathy Anderson
Eagan, MN