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
The 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
