“Safe, Healthy, Happy.” Steven Langenfeld is finally safe,
healthy and happy living with the services provided by Consumer Directed
Community Supports (CDCS) under his MR/RC Waiver. It hasn’t
always been that way for Steven. Steven is 40 years old, and has
a diagnosis of Cerebral Palsy, Mental Retardation, and Seizure Disorder.
He is very limited in his ability to talk. He had no choice in how
he is made, but he faces every day with a positive attitude. Steven
brings joy to everyone around him.
But Steven’s safety, health and happiness will be destroyed
under the CDCS Amendment and budget cuts. His per diem budget right
now is $226. The reduced amount under the new budget methodology is
$160. Worse still, Steven’s Day Treatment and Habilitation (DT&H)
expenses of $114 per day will have to come out of this budget, leaving
him only $46 per day for the staffing that has saved his life.
Let me tell you some
things about Steven’s life.
As a Direct Support
Professional, I worked in Steven’s group
home until 1999, when a staff member violently assaulted him. We went
through an “inconclusive” Vulnerable Adult investigation,
the staff member who assaulted him continues to work in the field,
and it was clear that Steven would not survive in the group home
environment. Clearly, he would never be safe, healthy or happy there.
So I arranged a situation where Steven could live with me in an apartment,
and CDCS made it possible beyond anything we could have imagined.
Steven takes in everything
that’s going on around him, even
if he can’t tell you. He has the same hopes and dreams that
we all have, and our life together has made it possible for him to
realize some of them. Most of the good things in his life would not
be possible for Steven in a group home.
Steven has a girlfriend
who joins him for dinner and special occasions (not possible in
the group home). We have our own cat, which would not be allowed
in the group home setting. Steven practices his domestic skills,
and learns new words mainly through the one-to-one contact we have
with him daily. Steven can now say his own version of “I
love you:” “Muff-you.”
And at home, Steven has independence that is not possible in a group
home. He cannot walk, but he can crawl. At home, Steven can crawl from
place to place. He can crawl in and out of his bed. He can get out
of the bath when he is done. In a group home, these things would be
impossible without endangering him.
At home, Steven participates more fully in his own life. In a group
home, he would likely have to spend much of his time in a wheelchair
or confined to his room.
If Steven has to return to a group home for lack of CDCS funding,
he may encounter that same staff member who assaulted him. His safety,
health and happiness will evaporate before his eyes.
Steven can say “Home!” He
loves his life at home. Please do everything in your power to restore
funding to CDCS so Steven can stay at home with us. Everybody who
knows Steven loves him. Nobody who loves Steven can possibly tell
him that he has to leave the place where he is Safe, Healthy and
Happy.
Peggy Williams
Bloomington, MN
This is the story of our five year old son, Tristan Rodriquez. Tristan's
disability consists of epilepsy, cerebral palsy, hypotonia, severe
scoliosis, vision problems, and global developmental delay. Tristan
has a wheelchair that we use to get him around and it is also custom
fitted for his spine. Tristan's needs consist of administering medications
three times per day, assistance with bathing, dressing, toileting,
grooming, eating, transfers, performing therapies to keep him from
being too stiff, positioning, monitoring seizure activity, and monitoring
his nightly feeding pump and during the day when ill. I have tried
working outside the home, but because of all the medical appointments
and illnesses that come up with Tristan I haven't been able to keep
a steady job for very long. Tristan basically needs 24- hour care.
The services we used to get in 2004 were chore service, pool therapy,
respite care, assisted technology, caregiver training, specialized
medical expenses (glasses), and getting equipment needed for Tristan
as he gets bigger. The services we get right now are parent of minor
staffing-part time, and PCA staffing. With the new proposed budget
we received, we will have to get rid of our out of home PCA staffing
for 2006. Our budget was cut by $33,902.50. Also, our parental fee
jumped from $25/per mo. to $75/per mo.
The goal for Tristan is for him to be able to stay living in his own
home with his family and to be as independent as he can be.
Jeffery and Danette Rodriquez
Shawn Wheelock
I’m Shawn Wheelock and my life is difficult because of pervasive
developmental disorder (brain’s frontal lobe defect), ADHD,
and a non-verbal learning disorder (brain’s right hemisphere
dysfunction), all since birth.
Coping with life is a great
challenge and receiving the original CDCS Waivered Services enriched
my experience tremendously! Minnesota’s
proposed daily budget ($67.79) has cut in half from my previous allotment
($122.06). In 2006 I start Day Training and Habilitation, which will
require more money than the State’s Waiver provides. I’m
very scared of what my future will hold. I do not want to live
in a group home, but have my own apartment and hopefully marry
my sweetheart after that.
My PCA is vital when I leave my home by providing transportation,
cueing me when I become loud and inappropriate in public and social
situations, and maintaining my safety because I am overly impulsive
and usually act before I think. I cannot control myself even with
special medications.
My health is affected by
my impulsiveness. I’ve fallen up
and down stairs and needed stitches. Once I kicked the shower
door so hard that I broke my big toe.
Nutrition and meals are
unimportant to me. I’m not interested
in eating until I’m starving and then I choose the fastest
and sweetest item available. My PCA prepares healthy meals for me
and encourages me to assist in the cooking, but I usually refuse.
I need supervision when eating to remind me to chew well, slow down,
drink liquids, not to gulp air, to talk only between mouthfuls, and
to finish my meal. I’ve needed the Heimlich Maneuver twice,
because I had food stuck in my windpipe.
Respite services gives my daily PCA a break for an occasional weekend
off. I also get a break in my routine of video games and cartoons.
I am happiest in the downstairs of my home because I feel safe and
comfortable there, but I need to learn how to live in this world
instead of hiding in it.
Thank you,
Shawn P. Wheelock and Guardian/scribe, Annabell Twice
Annie McKee's Family
Annie is a 23-year old young adult, born with spina bifida. She
is paralyzed from the chest down and uses a wheelchair. Annie has
a history of significant choking spells associated with eating and
drinking that require constant supervision to reduce the risk of
aspiration. Annie has gross motor delays, fine motor delays, and
developmental delays. She sees with monocular vision, which affects
her peripheral vision and her visual acuity for driving her wheelchair.
Annie is dependent on others for all of her health and safety needs
including using the bathroom, bathing, grooming, dressing, eating,
range of motion, and the ability to respond in an emergency. She
needs her physical well- being closely monitored and coordinated
in all areas including nutrition, physical exercise, therapy, health
care, medication and safety. Annie is dependent on her parents to
manage her home. They provide support for her in the areas of shelter,
food, clothing, paying bills, assistive technology, transportation,
adaptive equipment needs and upkeep in her home.
Annie’s waiver is primarily used to meet her medical and staffing
needs. Our goal for Annie has always been maintaining her health,
safety, emotional and physical well-being and providing her the opportunity
to grow to her fullest potential. We created a community-based program
instead of sending her to a Day Training & Habilitation facility.
Annie’s CDCS waiver did not provide for this program. Annie’s
community program does not isolate, separate or limit Annie’s
potential. It assists her in developing functional daily living skills
that can help her become more independent. Annie wants to be at home
with her family and included in her community.
Annie’s parents manage Annie’s waiver budget. Bill,
Annie’s father, has been employer of record for Annie’s
staff, so 10% of her CDCS waiver money that would go to a middle
provider can be saved and put towards necessary staff, goods and
services for Annie. Annie’s CDCS waiver budget of $210.67 per
day has been cut 50% to $106.38. This amount includes her day program
and is the amount proposed when the Department of Human Services
wanted to cut her waiver budget through “rebasing.”
The reduced rate of
$106.38 per day will most likely force Annie off the CDCS waiver.
Formal supports will obviously cost more, and Annie will get fewer
hours for staff and no goods or services. The reason we chose CDCS
was because of the difficulty of hiring dependable staff at the
wages available under formal supports. Annie’s
medical needs require her staff to have advanced, specialized nursing
skills.
We are unsure if formal supports will even cover the necessary hours
and will need to seriously consider breaking up our family and putting
Annie in out-of-home placement.
Andrea McKee
New Brighton, MN
