On October 1, 2004, families using the Consumer Directed Community Supports option (CDCS) under the Minnesota Waiver were notified of changes in their services and their budgets. Some families received increases in their budgets. Many families, however, experienced dramatic cuts in their budgets. The stories below written by parents show how CDCS cuts have hurt Minnesota families trying to keep children with disabilities at home.

Justine Doolittle

My daughter Justine is 17 years old and has both physical and mental disabilities. She has cerebral palsy and epilepsy; is non-verbal and non-ambulatory; and functions at a cognitive level of about 2-3 years of age. Justine is also treated for both osteoporosis and scoliosis. She has no fear of strangers or any self-preservation skills. She is dependent on others for all aspects of daily living.

The CDCS program is crucial to our family. Before we had the CDCS option, we were using Personal Care Attendant (PCA) services through a State Regulated Home Health Agency. Our experience was horrible. Under that arrangement, hours were never covered, and the PCAs were not punctual, reliable, or responsible. Justine was left unattended, neglected, and even physically abused. By being able to manage Justine’s funds through the CDCS option, we are able to run employment ads specific for Justine, pay above minimum wage, and have quality applicants to choose from.
In the past four years while on CDCS, Justine’s needs have been met in a happy, healthy, safe environment by qualified personnel.

Last year Justine’s CDCS budget was cut by 18%. Because of this cut, we discontinued using a provider as the Employer of Record and are doing our own payroll services. We no longer have funds to cover adaptive clothing, special dietary needs, and other needed items. Now the State is proposing another 30% reduction. In addition, our parental fee for our services has gone up 24% in the past two years and is currently $8,391 for 2005.

Our household uses support staff to enable both parents to be employed. With the proposed budget cuts, we would not be able to safely support Justine in our home while keeping our jobs. Going back to the previous situation – and risking the hiring of underpaid and unqualified staff – is a real concern. I am afraid we would need to pursue other placement options.

Julie Doolittle
Farmington, Minnesota

Taylor Garin

I am writing this letter on behalf of our 11-year-old son, Taylor, who has severe disabilities. He cannot speak for himself, so we will be his voice. It is almost impossible to explain the extent of Taylor’s needs, and even more impossible to explain the magnitude of how he will be affected by the devastating cuts to the Consumer Directed Community Supports (CDCS) we receive. Taylor is legally blind, has several conditions which make him medically fragile, uses a wheelchair, and cannot communicate his needs. Taylor is total care, 24 hours a day.

I personally suffer from a debilitating form of fibromyalgia and cannot care for Taylor myself. My husband and I rely entirely on CDCS funding to pay for staff. Staff is not a luxury in our family; it is an absolute necessity.

This year has been the most difficult year we have experienced since Taylor was born. He missed over 100 days of school and was hospitalized three times. He developed two new life-threatening illnesses that required 24-hour care. There could not have been a worse time for an unfounded budget cut.

In May, the State PCA assessment increased Taylor’s budget to 24 hours a day from 18, after updating his medical complications. Three months later, we received the notice cutting Taylor’s CDCS budget by 75%. His daily budget went from $359.02 to $102.20. This has created a crisis. Taylor could die without proper care.

These cuts are devastating to our family as well. We use almost every dollar for staff support to keep Taylor at home and not in an institution. If he were institutionalized, which would be hospital level care, the cost to the state would be more than triple his current budget.

We couldn’t get staff when we only had PCA services through an agency. They only pay $8.50 per hour, and yet they charge the state between $15 and $25 per hour. We pay our staff $15 per hour, and they are trained like nurses. Getting nurses to take care of Taylor (which is impossible due to the nursing shortage in this country) would cost $45-$60 per hour.

We do not have a handicapped-accessible vehicle. We cannot afford to buy a van yet, and our hopes for converting a van, when we can afford one, have vanished with the budget cut. My husband still carries Taylor up and down the stairs and into our truck; Taylor weighs 85 pounds.

We have not been able to use his waiver budget to buy other necessary adaptive equipment, because his level of care uses almost every dollar. What isn’t used for staffing is used on special dietary requirements that support his weakened immune system, as well as consultation services to a licensed Naturopathic Doctor endorsed by Taylor’s pulmonologist.

We are exhausted. Taylor is an angel, and we are blessed to have him in our lives. However, life is extremely difficult when you’re caring for a child you love, who has such severe disabilities and major medical complications.

We cannot understand how anyone could have calculated the new budget if they knew anything about Taylor and his needs. The news of this budget cut was emotionally devastating.

The only way we can get through a day is because we have Taylor home with us, we have each other, and we have wonderful loving competent staff, which we are in jeopardy of losing. Please help us help Taylor.

Lenni Garin
Rockford, Minnesota

 

The Hight Family

My daughter Courtney is a vulnerable 24-year-old, totally dependent on others for her care. She has cerebral palsy and severe cognitive disabilities, is unable to see, is nonverbal, and has many other medical needs. She depends completely on her gastrostomy tube for her nutrition and is trach-dependent; the latter requires monitoring by a pulmonologist. She is on a vent and warm humidity when in bed and uses oxygen when necessary. Another tube in her body helps with the elimination of bodily wastes. Her bones are brittle from osteoporosis, and extreme care must be taken when transferring, changing clothes, or bathing. Transfers are done using a special lift and a special shower chair for her daily bath. Fourteen different medications help control her seizures, spasticity, urology, respiratory, and pain, and help deal with her osteoporosis.

Courtney has a team of four nurses, eleven doctors, and a supportive family who are committed to maximizing her health status at home. Courtney’s nurses have been with her for over four years in the home, and they can anticipate her needs.

As Courtney’s mom, I am very appreciative of the dedication of Courtney’s county case worker, county staff, and Arc for helping us with our Consumer Directed Community Supports (CDCS) waiver up to this point. Virtually all of Courtney’s CDCS funding is used for support in the home. Courtney is happy and well cared for, only because of the in-home support benefits guaranteed with her CDCS waiver. I, in turn, have been able to work.

Because of CDCS, she has been able to live at home in a warm, loving, caring, clean, and thriving environment and have consistent nursing staff. She has thrived to her fullest potential and has surprised the medical books and her family – living 10 years beyond her life expectancy. Our home is completely handicapped accessible, anticipating Courtney’s future and enabling us to keep her at home. With CDCS, her future is very encouraging.

In 2004, we received $140,000 for CDCS. This may seem like a substantial amount of money, but this sum would be much higher if she were placed outside of our home. We were told earlier this year that our budget for 2005 would be $47,000 – a 66 percent cut.

If this proposed cut were finalized, 2005 means a scary future for Courtney. We would have to fire three nurses to stay within this budget. Courtney’s health would be jeopardized. If I were to provide the services myself, I would have to quit my full-time job, forfeit my health insurance, and risk financial devastation. The cost of maintaining these services would force me to sell our home and deplete years of savings set aside for the family’s retirement.

As a family, we will do what ever it takes to keep Courtney at home and provide an environment that will allow her to live happy, healthy, and secure. Please help us reverse those changes in CDCS that will have horrible consequences for families like ours.

Pennie Hight
Farmington, Minnesota

 

Martin Anderson

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 weekday 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, Minnesota

T

he McLaughlin Family

Our daughter Katie is a 17-year-old with cerebral palsy. Her gross and fine motor skills are severely impaired, and she needs maximum assistance in every aspect of her daily life. We want to keep her at home for as long as possible, because we believe we can meet her needs better than a state- or county-run facility can. We want what any parents want for their child: happiness, independence, acceptance, and a chance to achieve her goals, but that will require some help.

The crucial need covered by CDCS for Katie is the use of personal care attendants when we are not present. These individuals assist our daughter with tasks ranging from taking her coat off when she gets home from school to taking immediate action in the event of an emergency. Katie would know what to do in the event of most emergencies, but is physically unable to actually do it.

Our proposed budget was reduced by 38 percent. Our parental fee was increased by 64 percent in 2003 and again for 2004-05. Even if a personal care attendant were the only service she needed, this budget would not cover the hours we need. If we don’t have her covered with a competent staff person, we don’t work. If we don’t work, we don’t pay taxes. There are people who will work for less, but the old saying “You get what you pay for” applies here. We have had dozens of attendants for our daughter, and some of them have been so inferior, our daughter’s safety was literally at risk.

CDCS has worked well for our family and has allowed us to make our house and community more accessible for Katie, but her independence is being threatened. All of the fee increases and budget cuts appear to be designed to get families to drop a program that is supposed to help our kids.

Our family doesn’t mind doing our share or paying a little more, and we certainly don’t mind giving up some things, but where is the fairness in all of this? We’ve always believed that our government should provide supports that help people. CDCS is one support that certainly has helped us, and the cuts that we have received should be reversed.

Dawn McLaughlin
St. Paul, Minnesota

A Worried Minnesota Family

D. is our son, a 23 year-old, much-loved young man who lives with us, his parents. He was born with severe hydrocephalus which prevented normal development of his brain. His disabilities include severe mental retardation, cerebral palsy, severe scoliosis, seizures, blindness, and an inability to walk, talk, or protect himself. His needs are similar to those of a two-month-old infant. He has a shunt from his brain to his heart which has been replaced at least 17 times. He also has a gastrostomy tube for feeding.

In spite of the above disabilities, D. is an extremely engaging and personable child who has the ability to smile, laugh, kiss, and vocalize an uncanny similarity to “I love you” and “Hey, Mom.”

We adore our son and have opted to keep him at home with us as long as we are able to care for him. Physical care is difficult. D. weighs over 90 lbs. and must be lifted from his wheelchair, from his seating, from the sofa, from his bath chair, from his bed, etc. I am 55 years old and still can do this in spite of a herniated disk. My husband is 56 and has already suffered a heart attack, but he still can carry our son small distances. We are aware that if our son were in a group home, his care would be compromised, and the cost of his care would also be much more than his previous budget, which was $59,000 including $22,000 for his day programming.His new budget will be $39,000 — $17,000 for in-home care and $22,000 for the day program.

As stated, our goal is to keep our son at home with us as long as possible. This goal has been possible due to one of us not working outside the home, as well as hiring and paying part-time aides and LPNs to physically help with his care. $17,000 may seem like a lot of money, but in health care, it is barely enough for six months of care. This does not include other costs for equipment or adaptations. The traditional waiver program which we used before CDCS provided him with more expensive and untrained and inefficient care. With CDCS we have been able to hire and train our own excellent aides.

We are fully aware of the need for budget cuts. However, we do not understand the drastic reductions in a program which, in the long run, would cost the state much less by enabling families to keep their children with disabilities at home and in the community, rather than isolating them in much more expensive group homes.

Sincerely,
A Worried Minnesota Mother