KATIE BECKETT WAIVER PROPOSAL
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KATIE BECKETT WAIVER
PROPOSAL
Allison Lesmann Meaghan Peters Tracy Smith Coni Westmoreland
UTAH REGIONAL LEADERSHIP EDUCATION IN NEURODEVELOPMENTAL AND RELATED DISABILITIES
Abstract
Over one million people with medically complex health care needs are afforded the
opportunity to live in their own homes as opposed to living in an institution as a result of the
Katie Beckett waiver. The original Katie Beckett waiver was passed in 1982. It is considered a
Tax Equity and Fiscal Responsibility Act (TEFRA) waiver by the Centers for Medicare &
Medicaid Services (CMS). Almost all states have implemented a program to assist this
population, who would otherwise require institutionalization, either through TEFRA or Home
and Community-Based Services (HCBS) (Waiver Families, 2012). Each state is required to have
a plan in place, but programs vary (Centers for Medicare & Medicaid Services, n.d.).
The purpose of this paper is to educate readers on the potential use of the Katie Beckett
waiver to improve service delivery and reduce costs for providing care to Utah residents. Current
Utah waivers will be discussed including costs, benefits, coverage, number of individuals served,
and the potential benefits of addition of the Katie Beckett Waiver.
Introduction
This policy paper will be utilized to advocate and educate to state Medicaid decision
makers and state legislators on the needs within the state of Utah for the Katie Beckett Waiver.
The proposal will include background on the Katie Beckett Waiver, national Katie Beckett
Waiver information, a synopsis of current Utah waivers, family testimonials, and cost estimates
for implementation of the Katie Beckett Waiver in Utah. This project aims to enable the family
advocacy group Family Voices to pass the Katie Beckett waiver through collaboration and
education of the state Medicaid department and state legislators.
Program Overview
Procedures
Katie Beckett Policy Proposal 1
This policy proposal was made with the intent to help the advocacy group Family Voices
educate legislators concerning the need for a Katie Beckett Waiver in the state of Utah. The
major factors included in this proposal are:
1. Background on the Katie Beckett Waiver: Who is Katie Beckett? Why was the waiver
proposed? How was it proposed? Where was it passed? What does it include, and what
are the stipulations for qualifying?
2. Nation-wide Katie Beckett Background: What states have the Katie Beckett Waiver?
How many people are helped? How much does it cost the states?
3. What waivers does Utah have in place right now? How many patients are helped through
current waivers, and what does it cost the state? How many more patients would qualify
for the Katie Beckett waiver than are covered under waivers now? How much
additionally would it cost the state for the Katie Beckett waiver?
4. Family testimonials: both from families that have benefited from the Katie Beckett
Waiver in outside states, and from families that could benefit from a Katie Beckett
Waiver in Utah.
Evaluation
This paper will be evaluated with cooperation from the Family Voices group. Family
Voices will review the policy proposal in order to ensure adequate information is collected for
assistance in education about the Katie Beckett waiver and its possibilities within the state of
Utah. After review, Family Voices will identify if additional information is needed to assist in
passing the Katie Beckett Waiver in Utah.
Results
Background on Katie Beckett Waiver
Katie Beckett Policy Proposal 2
If you don’t have a medically complex child, it is likely you have never heard of Katie
Beckett. Yet because of her, thousands of medically complex children and their families have a
far different life than what they could have expected prior to her journey. Mary Katherine
“Katie” Beckett started out a fighter from the moment she was born premature on March 9th,
1978 at just over two pounds. She was not yet six months old when she contracted viral
encephalitis. After a grand mal seizure, she fell into a coma for ten days and the encephalitis
attacked her central nervous system. Most devastating, her ability to breathe was impaired due to
nerve damage to her diaphragm. She was placed on a respirator and received a tracheostomy as
she fought multiple battles with pneumonia (National Institutes of Health, 2002).
Over several years, the nerves regenerated and Katie was weaned from the respirator; she
was eventually able to breathe on her own again. Her doctors decided she could return home to
her family if she used a ventilator while she slept and took anti-seizure medication. And that is
where a devastating medical story turned to a policy changing event. The medical community
understood that Katie would be best served at home where she would have a stimulating
environment and would not be exposed to other sick children (Katie Beckett, n.d.). Her parents,
Julie and Mark, had spent three years in the pediatric intensive care unit learning how to care for
Katie. Katie’s family did not qualify for Medicaid due to their income level; however, at the
time, their private insurance with a one million dollar insurance cap, had been depleted (Katie
Beckett, n.d.). At the time, if a child required hospitalization, nursing home, or an intermediate
care facility for thirty days or more, the family income was not used to determine eligibility for
Medicaid, if services continued within a care facility. Medicaid refused to pay for her care at
home due to the requirement of a hospital stay for respirator use. In 1981, Katie’s doctors
believed her condition had stabilized to receive in-home care. However, because of Medicaid’s
Katie Beckett Policy Proposal 3
income policy, her family had very few options for Katie’s care. Katie would have to be placed
in an institution, her family could become impoverished while caring for Katie with no
assistance, or they could relinquish custody of Katie to the state. Katie and her family were stuck
in limbo.
Katie’s care in the hospital was costing Medicaid six times the amount she needed to stay
at home for the same care. Her mother, Julie Beckett, was able to convince Tom Tauke, a
Republican congressman from Iowa, to support a bill for Katie to go home but continue to
receive Medicaid. Tauke agreed to sponsor legislation for the “Katie Beckett waiver,” making
home and community care a priority within the realm of policy (Katie Beckett, n.d.). The
purpose behind the waiver was to ensure that children who under ‘normal’ circumstances would
not qualify for Medicaid due to family income could claim an exception and receive care at
home, while retaining their Medicaid coverage, regardless of parent’s income. Tauke ‘hand
walked’ the proposal through the HHS department, where it was initially denied. But the idea of
the waiver did not die there.
On veteran’s day of 1981, Tauke went beyond HHS to the vice-president, George H. W.
Bush, who was than in charge of the Regulatory Reform Commission. He expressed the concern
to Bush that Katie couldn’t be the only patient utilizing more Medicaid funding than necessary.
Vice President Bush made the decision to discuss the issue with President Reagan. That same
day, President Reagan contacted the Director of Medicaid. A day later, President Ronald Reagan
announced in a press conference that Katie would be able to go home with aid, citing her case as
“an example of unreasonable Medicaid regulations” (Waiver Families, 2012).
Two days after the press conference, Katie was released from the hospital with full
Medicaid coverage. Katie made it home in time for Christmas that year. The week she was
Katie Beckett Policy Proposal 4
released her parents were overwhelmed with media interviews. Within the week, over 200
families contacted HHS, telling them of their family’s similar scenario. HHS put together a Katie
Beckett board that clarified the ramifications the policy would have on the Medicaid program,
solidified qualifications of those who would be eligible for the program, discussed plans of care,
and a process to ensure that services were available within the communities of these children.
Originally, the HHS Katie Beckett board approved or denied each individual case. Two
years and over 200 cases later, HHS realized the economic effects of the federal board reviewing
each case, and decided to give states the ability to apply for federal Katie Beckett funding, with
dispersal at state level. Currently each state has its own eligibility requirements for the waiver
(with the 5 federal requirements) and only twenty-two states have adopted the policy. After the
passing of the Americans with Disability Act in 1990, states recognized the consistency of ADA
goals with the Katie Beckett waiver intent, specifically the mandate that “individuals must
receive services, ‘in the most integrated setting appropriate’” (Waiver Families, 2012). Over one
million patients now receive assistance through the Katie Beckett waiver.
When first enacted, the Katie Beckett waiver was considered a TEFRA waiver by CMS
regulations, for children with medical complexity and catastrophic medical costs. Since then,
half of the states with the original TEFRA waivers have made new waivers, called HCBS
waivers, which target the same population. The difference between waivers has been stated,
TEFRA waivers, when implemented by the states, are required to serve all children who
meet medical eligibility criteria, and only extend regular Medicaid services to this
population. HCBS waivers, on the other hand, are not entitlements and can restrict the
number of children served, but they may also provide additional services not covered by
Medicaid, such as home modification and respite. Currently, almost all states have some
type of program for this population, with about forty percent of states offering Medicaid
through TEFRA, about sixty percent offering HCBS waivers, and a few offering TEFRA-
like or other unique programs. (Waiver Families, 2012)
Katie Beckett Policy Proposal 5Additional support services have since been added, covered by the Affordable Care Act. The
Community First Choice Option has increased funding and support available to move individuals
out of institutions and into communities.
Current criteria that must be met to qualify for the Katie Beckett waiver include the
following:
1. Child must be eighteen years of age or younger
2. Meet Supplemental Security Income (SSI) childhood disability requirements
3. Meet the individual state’s criteria for needing an institutional level of care
4. Medical care needs can be safely provided outside of an institutional setting
5. Cost of care in the community must not exceed the cost of care in an institution (Centers
for Medicare & Medicaid Services, n.d.).
Healthcare expenses covered by Medicaid are included within the waiver, such as outpatient
care, inpatient care, medical equipment, and home health care. Other services may vary
according to the state (Centers for Medicare & Medicaid Services, n.d.).
Despite her medical challenges, Katie grew up living a full life. At the age of ten she
became an advocate for children with disabilities and throughout her life spoke to all levels of
politicians including Presidents. She volunteered at the YWCA and worked at a music store in
her local mall. But she kept returning to her passion for advocacy and in high school she became
an intern at Exceptional Parent Magazine. In 2001, Katie graduated from college and began
pursuing her passion for creative writing (National Institutes for Health, 2002). She died May
18th, 2012 in Cedar Rapids, Iowa in the same hospital where she born. At thirty four, she was
more than three times the age she had been predicted to live (New York Times, 2012). Even in
Katie Beckett Policy Proposal 6death, Katie wanted to give back and donated her body to the University of Iowa for research
(The Gazette, 2012).
Although Katie may have become a celebrity because of her high profile case, Katie was
granted the ability to live a typical life at home with her family instead of in an institution. And
for that, she considered herself lucky. Before her death Katie Beckett remarked on her luck,
“‘The most important thing I want people to know is that I am really just a girl who loves
concerts, basketball and wrestling. I am just a girl who got very, very lucky’” (Kids as Self
Advocates, n.d.)
Nationwide Katie Beckett Background
Currently, nineteen states offer the Katie Beckett, TEFRA Waiver, or a look-alike waiver.
States that offer the TEFRA are: Alaska, Arkansas, District of Columbia, Georgia, Idaho,
Massachusetts, Michigan, Minnesota, Mississippi, Nebraska, Nevada, New Hampshire,
Oklahoma, Rhode Island, South Carolina, South Dakota, Vermont, West Virginia, and
Wisconsin. Most states (eleven) follow the federal guidelines for their TEFRA waiver (see
Exhibit 1).
Eight states have added regulations to the federal guidelines for TEFRA waivers (see
Exhibit 2). Six states changed the federal age regulation. Other states have created guidelines for
income and assets for children eligible for the TEFRA Waiver. Several states also require
children receiving services to live with a biological or adoptive parent. Additionally, the District
of Columbia added a restriction on length of illness, stating the child must have the illness for
longer than twelve months or for the illness to be terminal. Furthermore, South Dakota states the
child must require prolonged assistance as determined by the Department of Education.
Katie Beckett Policy Proposal 7Unfortunately, information about the states’ specific costs and how many children receive
assistance through the TEFRA waiver is not widely publicized. Our team contacted the Long
Term Disabilities offices for each of the nineteen states currently offering the TEFRA waiver,
and only two states returned information. John New, South Dakota family support waiver
manager, stated their waiver serves 750 individuals, while state costs are $3,000 per year, after
Medicaid payments (New, 2014). The state of Mississippi representative told our team that 1,034
children utilized their TEFRA waiver last year, but no state financial information was available
(Donaho, 2014).
Additionally, Arkansas published a state report regarding their Katie Beckett Waiver
participants and stated 3,543 children utilize the waiver, where costs are $1,593.78 per member
per year in 2013 (Hecker & Higgs, 2013). Information from Idaho was retrieved from their CMS
representative, who stated that Idaho served 1,411 children with their TEFRA waiver, with a cost
of approximately $24 million annually (Kinne, 2014). After 2010, a voluntary tiered cost-sharing
requirement was put in place for families to pay premiums to the state based on family income
(Idaho Department of Health and Welfare, 2009). Through this cost-sharing mechanism (which
is done by several states), the cost to each state of the TEFRA program can be drastically
reduced.
Nation-wide Additional State Waiver Comparisons
Out of the nineteen states that offer TEFRA waivers, eighteen offer additional waivers.
Additional state waivers vary in number from one to eleven. Wisconsin offers eleven additional
waivers, while Rhode Island offers one additional waiver (see exhibit 3 & 4).
The state most similar to Utah in population served is South Dakota, but their cost is
much less than current Utah cost. Others states similar in cost to Utah are: Alaska, District of
Katie Beckett Policy Proposal 8Columbia, Idaho, Mississippi, and New Hampshire. For purposes of this report, Idaho data will
be used for financial estimates and possible number of children served if the Katie Beckett
Waiver was passed in Utah.
Current Utah Waivers
Current waivers for children in Utah include the Technology Dependent Waiver (ages 18
and under) which serves approximately 130 children; the Community Services Waiver (no age
requirement) which serviced approximately 603 children under the age of 19; and the Autism
Waiver (ages 2 – 6) which served approximately 250 children. The Autism waiver was only
approved for two years, and therefore will not included in this long-term analysis. Utah’s cost for
waivers covering all people and ages in the fiscal year 2013 was $214,915,096 (Division of
Services for People with Disabilities, 2014).
Family Testimonials
Testimonials from families outside of Utah utilizing the Katie Beckett Waiver
Meet Ava
Ava was born with spinal muscular dystrophy, type I
(Werdnig-Hoffman Syndrome), which makes her
fully cognitively aware but completely paralyzed.
Ava relies on a ventilator and cannot complete any
of her daily functions on her own. Despite those
challenges Ava is able to participate in special
education classes and is fully integrated within the
general education population. Ava enjoys summer
camp every year, and loves swimming. Ava is a
typical 10 year old. Sassy, full of attitude, and loves
to have fun. After her diagnosis, Ava’s social
workers told her mother about the Katie Beckett
Waiver program. Because of the Katie Beckett
Waiver, Ava has nursing care in her home, and her
family was able to remodel her bathroom in order for
it to be accessible with her wheelchair. Additionally,
Ava’s family has received medical supplies to help
with her routine care. Because of the Katie Beckett
Waiver, Ava’s mother is allowed to continue
working while Ava attends school, and is able to sleep at night while nurses tend to her care. Ava
Katie Beckett Policy Proposal 9is allowed to remain an active member of her community and family through nursing services
allowed through the Katie Beckett Waiver, that would otherwise be inaccessible to Ava and her
family.
Meet Amber
Amber was born with Rett Syndrome. While receiving
care through the infant/toddler program for her
developmental disabilities, her care manager
recommended the Katie Beckett Waiver to her parents.
Although Amber’s parents did not understand why they
would need additional help beyond their primary
insurance coverage, Amber’s parents decided to trust
Amber’s care manager and began the process. As her
mother explained, “No one teaches you these things when
you have a child.” Amber is lucky her parents listened to
the guidance they received. She has utilized services
through the Katie Beckett Waiver since she was three years old. As her pediatrician signed the
paperwork, he told Amber’s mother, “This might make it possible for her to work someday.” At
that point, Amber’s mother had not realized the limits Amber would encounter throughout her
life. Within the year, Amber’s mother realized the extent of her illness and often contemplated
when they would lose Amber, and how she would handle it.
Rett Syndrome was once believed to be degenerative, and while it no longer is considered
to be so, girls who are affected are faced with serious health complications. Amber’s parents
lived with the fear and knowledge that her life could be cut very short as a result. Keeping her
healthy was critical to ensuring she made progress in her development. She is now 18 years old.
Amber was not expected to talk, walk, eat without assistance, or complete any daily functions on
her own. Due to therapy and services Amber wouldn’t have received otherwise, she took her first
steps at age five, continues to develop additional speech, and can eat and drink on her own.
Amber was allowed to receive developmental therapy her insurance did not cover due to the
Katie Beckett Option and has since reached an independence no one ever thought possible. She
continues to surprise her parents with her independent nature. Therapies offered through the
Katie Beckett Option lead to increased health, higher independence, and some daily independent
functions. Amber is able to participate in school, and is looking forward to graduation this
spring. Her outlook and possibilities continue to surprise those around her, and will continue to
grow with continued efforts. Because of the services Amber was able to access, she is an active
participant within her family and her community.
Katie Beckett Policy Proposal 10Meet Iain
Iain is 12 and has been diagnosed with Asperger’s Syndrome but has
an alphabet soup of diagnoses – ADHD, anxiety, learning disabilities,
sensory processing disorder, developmental coordination disorder,
low tone and asthma.
Iain’s family had private insurance but it did not cover
occupational therapy services for sensory integration. His sensory
issues kept him from playing on the playground and generally moving
in his body. In New Hampshire the family could have qualified for
the CHIP program financially, but Iain would have had to go without
insurance for 6 months. With his asthma and the need for
medications and potential hospitalizations they could not risk not
having insurance for that length of time.
In 2008, Iain’s family learned about the HC-CSD (Home Care for Children with Severe
Disabilities) program from other parents in the waiting room of his occupational therapist’s
office. HC-CSD is not a waiver program, but an eligibility pathway to New Hampshire
Medicaid, and is known as a “Katie-Beckett Look-alike Program.” The HC-CSD program that
qualified Iain for Medicaid was the only way they could afford the occupational therapy, social
skills therapy and psychotherapy that he needed.
Iain is now in the sixth grade and in a mainstream classroom. He has a para-professional
in the classroom to keep him on task. He is able to participate in most regular physical education
activities. The occupational therapy, physical therapy and psychotherapy have been critical to
his success in a mainstream environment. Iain no longer needs the private occupational therapy
but he still receives physical therapy and psychotherapy. Iain’s family maintains their private
insurance plan but it is a high deductible plan of $3,000 so they use Medicaid to supplement until
the deductible is met each year.
As Iain’s mom explains, “The sooner these therapies are received the more productive
these kids will become in the future – they can go on to become taxpayers themselves. This is
important for the long term.”
Testimonials from families inside Utah that could benefit from the Katie Beckett Waiver
Meet Marcus
Marcus was born prematurely at 26 weeks and spent 104
days in the NICU. Marcus was eight months old when he was
diagnosed with Duchenne Muscular Dystrophy. Marcus is
currently asymptomatic except for some balance issues, but as he
gets older the disease will continue to progress. Because of
reactive airway disease that is triggered by cold and flu, Marcus
has been hospitalized 13 times and has frequent physician visits.
Marcus is currently four and his mom says he is “a charming,
adorable little kid that everyone gravitates to.”
Marcus was adopted by a family who had no intention of
adopting but when they were told that Marcus was in need of a
home, they began working on the adoption process. Both of
Marcus’ adoptive parents work full time. Currently, his mother
Katie Beckett Policy Proposal 11carries private insurance through her employer, Intermountain Health Care. The insurance is
good, but there is a yearly deductible of $3,000 and he usually meets that. While Marcus was
still inpatient after birth he qualified for Medicaid based on his income but once he came home
and the adoption was finalized, he no longer qualified due to their family income. In addition to
losing Medicaid, the family had to start paying a sliding fee for the early intervention services he
was receiving. Ultimately, Marcus’ family could not pay the fee, and had to end early
intervention services. Because of the adoption and medical costs for Marcus and the time off
work for Marcus’ adoptive mother (while not qualifying for maternity leave), their family filed
bankruptcy last year.
If Marcus qualified for the waiver and Medicaid was a secondary insurance to their
private insurance, the amount they are currently spending on out of pocket costs could go to
activities that would improve his quality of life while he is still able to participate in them. They
would love to sign him up for t-ball or soccer or take him on a family vacation. Marcus’ parents
want him to enjoy life to the fullest while he still can. Although the waiver may not be approved
in time for Marcus and their family, they want to share their story in hopes that they can help
other families in the future.
Meet Georgia
Georgia and her twin sister were brought
into the world at 36 weeks old by doctors
who held a grim outlook for Georgia’s life.
Despite the thoughts of doctors, Georgia was
able to go home with her family while
breathing and eating on her own, acts they
never thought Georgia would be capable of.
At four days old Georgia was admitted to
Primary Children’s Hospital and diagnosed
with hydrocephalus with brain anomalies. In
other words, Georgia was born with only a
small portion of her brain and the portions
that she does have are misshapen and small. For six months of her life Georgia cried 20 hours a
day, while having thalamic storms where her body lost control of her body temperature, heart
rate, and other autonomic body functions. Georgia was also born with severe gastric reflux.
Since receiving treatment for her gastric reflux, Georgia has been a rather calm child. Despite her
calmness, Georgia has had seizures since she was born, and still has ten to twenty per day, that
cannot be controlled through diet or medication. Oftentimes, when Georgia gets upset, her body
reacts through a seizure. Georgia has spent a significant portion of her life in and out of Primary
Children’s Hospital for various treatments, surgeries, and illnesses related to her brain condition.
Georgia doesn’t sleep more than four to six hours a night and has many nights where she only
sleeps two hours a night. Based on Georgia’s brain scans doctors are amazed that Georgia is still
alive. But Georgia still can’t function by any means on her own; she can’t talk, walk, or even
hold up her head. She must be attended at all times, even when she is sleeping, which makes for
most sleepless nights for her parents. Georgia’s mother is relieved from her caretaking duties for
a short time now, when Georgia is at school with a personal nurse, provided by the school.
Katie Beckett Policy Proposal 12Last year Georgia’s father took a lower paying job in order to receive health benefits.
Before that, from birth to age four, Georgia’s parents were paying $1,000 a month for a
premium, as well as up to $20,000 per year out of pocket. Now that the family has health
insurance, the average out of pocket is $2,200 per month. Since Georgia was born, the family has
lost all of their savings, rental properties, cars, and are on the verge of bankruptcy with over
$70,000 in debt because of Georgia’s medical care.
If the Katie Beckett Waiver were passed in Utah, Georgia’s family would be allowed
assistance with formula, diapers, medical equipment, and co-pays that aren’t currently covered
under their private medical plan. Georgia would also be allowed additional therapy sessions. Her
current private plan only allows for 30 therapy sessions per year, while not accounting for the
four different types of therapies she receives.
Meet Kimmie
Kimmie is a 16 year old with Dravet Syndrome, a
rare epilepsy syndrome. Kimmie experienced her first
seizure when she was only two and a half weeks old.
Her seizures became worse as Kimmie matured into
puberty. Now with larger seizures about once a
month, Kimmie’s cognitive abilities decrease with
every episode. Kimmie experiences around 40
seizures a night, with one larger one on a nightly basis
where one of her parents has to check on her and give
medication. Kimmie has the cognitive abilities of a seven year old. She has a nurse who works
with her at school where she works on basic math problems, reading skills, and writing skills. If
Kimmie is having a good day, where seizures are minimal, she can run, walk, and play. On bad
seizure days, Kimmie remains in a wheelchair, where she has difficulty doing small tasks, even
lifting her head. Kimmie must be attended at all times, so her mother works part-time while
Kimmie is at school. Kimmie is just like any other child with cognition of a seven year old. She
enjoys princesses, and recently participated in the Utah Miss Amazing Special Needs Pageant,
where she was able to feel like a princess herself.
After working with Kimmie as a child, Kimmie’s mom decided to go back to school in
order to help other families with children of special needs. Kimmie’s mom went back to receive
her teaching degree in Special Education, but has been unable to teach full time because of
Medicaid income restrictions. Kimmie’s parents are constantly concerned and aware of their
income amounts, on a week-to-week basis to remain under the income level for Kimmie’s
Medicaid. Kimmie’s father is also partially disabled, but cannot claim disability because of the
limitations to his work hours, which would further decrease the family’s income. On a monthly
basis Kimmie’s parents pay between $2,000 and $3,000 out of pocket for Kimmie’s care not
covered by Medicaid. Paying back past medical bills, cooling vests for Kimmie to wear since her
medication doesn’t allow her body to sweat, and PediaSure, which has kept Kimmie off a
feeding tube and able to maintain weight, are among the vast amount of expenses on a monthly
basis.
If offered the Katie Beckett Waiver, it is likely Kimme’s mother would take additional
work, enabling the family to pay a sliding fee and higher state taxes, both of which could help
Katie Beckett Policy Proposal 13offset the costs for the Waiver. Finally, through assistance from the Katie Beckett Waiver,
Kimmie’s parents may well lose some of the constant worry of financial ruin.
Discussion
Based on the Idaho Katie Beckett Waiver program, estimated cost for implementation of
the Katie Beckett Waiver to the state is $13,022,458 (see exhibit 5). Conversely, if these children
were placed into institutions state expenditures would amount to $439,177,920 (see exhibit 6).
This amounts for an enormous potential cost savings of $426,155,462 or a 97% cost reduction.
Unfortunately, Utah is far behind surrounding states in providing aid to children with
special healthcare needs and their families. Idaho, a state with similar values and culture assists
nearly 4,000 children through Medicaid Waivers, whereas Utah covers only 18% of those, with
assistance for 734 (see exhibit 4). Furthermore, despite Utah’s focus on family, children have
taken the last priority on current waiver programs (see exhibit 7). Of those served by current
waiver programs, only 734 are children (under 19), while the majority of children end up on the
waiting list (see exhibits 4 & 7). Finally, throughout the last few years, priority for children on
Utah waivers continues to decrease, while during fiscal year 2013 only 13.5% of covered by
DSPD waivers were children.
Recognition
This team would like to acknowledge Gina Pola-Money for assistance in gathering
pertinent information including initiation of the project, financial data from Idaho Medicaid
Department, assembling volunteer families for interview, and consultation throughout the
project. We would also like to thank faculty advisers: Teresa Pavia, Gwen Mitchell, and JoLynn
Webster for their input throughout the project’s progression. Finally, we would like to thank
those families that were willing to tell their stories in order for compelling evidence on the
importance of support for their children and families.
Katie Beckett Policy Proposal 14Exhibit 1. Federal TEFRA Regulations
1. Child must be 18 years of age or younger
2. Meet Supplemental Security Income (SSI) childhood disability requirements
3. Meet individual state’s criteria for needing an institutional level of care
4. Medical care needs that can be safely provided outside of an institutional setting
5. Cost of care in the community must not exceed the cost of care in an institution
Exhibit 2. State TEFRA Regulations Differing from Federal Regulations
Alaska¹
Children younger than 19
Child must be living in the home of the biological or adoptive parent
Arkansas²
Children younger than 19
Child's income under long term Medicaid limit
Child has countable resources under $2,000
District of Columbia³
Children younger than 19
Child's income less than 300% of SSI, and resources less than $2,000
Child has a terminal disability or expected to last more than 12 months
Massachusetts4
Children 17 and younger
Assets for the child under $2,000
Minnesota5
Children younger than 19
Child must live with at least one biological parent
Child's income must be under 100% FPL
South Carolina6
Child must live at home
Child's gross monthly income must be below $2,094
Child's resources must be at or below $2,000
South Dakota7
Children younger than 23
Child must live in family home.
Child requires prolonged assistance as determined by the Department of Education
Wisconsin8
Child must live at home with family.
1
http://www.qualishealth.org/sites/default/files/TEFRA-FAQ_sh%20(4).pdf
2
https://www.medicaid.state.ar.us/InternetSolution/General/programs/tefra/tefra.aspx
Katie Beckett Policy Proposal 153
http://dchealthcheck.net/documents/KB-Fact-Sheet-for-Community-July-2012.pdf
4
http://www.mass.gov/eohhs/docs/eohhs/cms-waiver/ma-1115-amendment-approval-oct-1-
2013.pdf
5
http://www.pacer.org/webinars/hiac/TEFRA_Web_-TEFRA_Summary.pdf
6
http://www1.scdhhs.gov/openpublic/InsideDHHS/Bureaus/EligiblityPolicyAndOversight
7
http://dhs.sd.gov/dd/family/eligibility.aspx
8
http://www.dhs.wisconsin.gov/children/kbp/eligibility.htm
Katie Beckett Policy Proposal 16Exhibit 3. Additional Waivers by State
State Target Population Cost (2011) Waiver Number
Alaska 1. DD including ID & ASD 1. $115,334,461.00 1. 0260
2. Aging 2. $45,808,314.00 2. 0261
3. Physical Disabilities 3. $34,840,000.00 3. 0262
4. Medically Fragile 4. $11,664,464.00 4. 0263
Total Cost: $207,647,239
Arkansas 1. DD including ID & ASD 1. $156,975,281.00 1. 0188
2. Aging 2. $65,180,414.00 2. 0195
3. Physical Disabilities 3. $41,006,658.00 3. 0312
4. Aging/Physical Disabilities 4. $10,468,310.00 4. 0400
Total Cost: $273,630,663
District of Columbia 1. DD including ID & ASD 1. $146,817,560.00 1. 0307
2. Aging/Physical Disabilities 2. $100,519,181.00 2. 0334
Total Cost: $247,336,741
Georgia 1. Aging/Physical Disabilities 1. $322,701,883.00 1. 0112
2. DD including ID & ASD 2. $61,857,452.00 2. 0175
3. DD including ID & ASD 3. $297,761,405.00 3. 0323
4. Medically Fragile 4. $16,519,458.00 4. 4116
5. Physical Disabilities 5. $37,084,317.00 5. 4170
Total Cost: $735,924,515
Idaho 1. DD including ID & ASD 1. $69,379,943.00 1. 0076
2. DD child including ID & ASD 2. $0 2. 0859
3. DD child including ID & ASD 3. $0 3. 0887
4. Aging/Physical Disabilities 4. $101,651,041.00 4. 1076
Total Cost: $171,030,984
Massachusetts 1. Aging/Physical Disabilities 1. $103,482.760.00 1. 0059
2. Intellectual Disabilities (ID) 2. $696,873,026.00 2. 0064
3. Brain Injuries 3. $7,944,878.00 3. 0359
4. ID 4. $147,736,587.00 4. 0826
5. ID 5. $0.00 5. 0827
6. ID 6. $0.00 6. 0828
Katie Beckett Policy Proposal 177. Autism Spectrum Disorder (ASD)- 7. $733,228.00 7. 40207
Child 8. $0.00 8. 40701
8. Brain Injuries 9. $0.00 9. 40702
9. Brain Injuries Total Cost: $809,033,898
Michigan 1. DD including ID & ASD 1. $423,030,705.00 1. 0167
2. Aging/Physical Disabilities 2. $150,980,911.00 2. 0233
3. SED 3. $3,445,384.00 3. 0438
4. DD child including ID & ASD 4. $22,161,014.00 4. 4119
Total Cost: $599,618,014
Minnesota 1. Aging 1. $251,976,398.00 1. 0025
2. DD including ID & ASD 2. $990,095,467 2. 0061
3. Physical Disabilities 3. $450,023,108 3. 0166
4. Physical Disabilities 4. $19,656,717.00 4. 4128
5. Brain Injuries 5. $92,891,461.00 5. 4169
Total Cost: $1,804,643,151
Mississippi 1. Physical Disabilities 1. $42,292,575.00 1. 0255
2. Aging/Physical Disabilities 2. $104,175,942.00 2. 0272
3. DD including ID & ASD 3. $42,805,003.00 3. 0282
4. Aging/Physical Disabilities 4. $5,841,021.00 4. 0355
5. Physical Disabilities 5. $18,142,825.00 5. 0366
Total Cost: $213,257,366
Nebraska 1. Aging/Physical Disabilities 1. $72,006,581.00 1. 0187
2. DD 2. $8,250,216 2. 0394
3. DD 3. $914,903 3. 0395
4. DD 4. 172,768,828 4. 0396
5. DD 5. $1,208,688.00 5. 0454
6. Brain Injuries 6. $660,505.00 6. 40199
7. ASD-Child 7. $0.00 7. 40660
8. DD-Child (Including ID & ASD) 8. $18,588,196.00 8. 4154
Total Cost: $274,397,917
Katie Beckett Policy Proposal 18Nevada 1. DD including ID & ASD 1. $70,814,639.00 1. 0125
2. Aging 2. $4,447,848.00 2. 0152
3. Aging 3. $3,187,795.00 3. 0267
4. Aging/Physical Disabilities 4. $263,989.00 4. 0452
5. Physical Disabilities 5. $3,587,193 5. 4150
Total Cost: $82,301,464
New Hampshire 1. DD including ID & ASD 1. $186,291,720.00 1. 0053
2. Aging/Physical Disabilities 2. $52,989,030.00 2. 0060
3. DD child including ID & ASD 3. $5,584,378.00 3. 0397
4. Brain Injuries 4. $16,096,094.00 4. 4177
Total Cost: $260,961,222
Oklahoma 1. Intellectual Disability 1. $160,966,486.00 1. 0179
2. Aging/Physical Disability 2. $188,914,004.00 2. 0256
3. Intellectual Disability 3. $22,059,401.00 3. 0343
4. ID Child 4. $2,762,029.00 4. 0351
5. Intellectual Disability 5. $91,710,061.00 5. 0399
6. Aging 6. $20,258.00 6. 0809
7. Physical Disabilities 7. $75,664.00 7. 0810
8. Medically Fragile 8. $564,897.00 8. 0811
Total Cost: $467,072,800
Rhode Island 1. Aging/Physical Disabilities 1. $0 1. 0040
2. DD including ID & ASD 2. $0 2. 0162
3. Aging 3. $0 3. 0176
4. Aging/Physical Disabilities 4. $0 4. 0335
5. Physical Disabilities 5. $0 5. 4126
**Rhode Island terminated all
1915(c) waivers during FFY 2009
and provides HCBS under an 1115
waiver.
South Carolina 1. HIV/AIDS 1. $5,580,522.00 1. 0186
2. DD including ID & ASD 2. $264,140,873.00 2. 0237
3. Physical Disabilities 3. $21,770,172.00 3. 0284
4. Aging/Physical Disabilities 4. $147,736,587.00 4. 0405
Katie Beckett Policy Proposal 195. ASD-Child 5. $12,853,393.00 5. 0456
6. Medically Fragile 6. $665,307.00 6. 0675
7. DD including ID & ASD 7. $17,678,694.00 7. 0676
8. Physical Disabilities 8. $1,499,420.00 8. 40181
Total Cost: $471,924,968
South Dakota 1. DD including ID & ASD 1. $96,915,379.00 1. 0044
2. Aging 2. $9,288,038.00 2. 0189
3. Physical Disabilities 3. $3,463,225.00 3. 0264
4. DD child including ID & ASD 4. $2,571,092.00 4. 0338
Total Cost: $112,237,734
West Virginia 1. DD including ID & ASD 1. $253,517,837.00 1. 0133
2. Aging/Physical Disabilities 2. $114,353,820.00 2. 0134
Total Cost: $367,871,657
Wisconsin 1. Aging/Physical Disabilities 1. $56,230,766.00.00 1. 0154
2. DD including ID & ASD 2. $163,072,877.00 2. 0229
3. Brain Injuries 3. $6,621,211.00 3. 0275
4. Aging/Physical Disabilities 4. $294,853,908.00 4. 0367
5. DD including ID & ASD 5. $481,692,899.00 5. 0368
6. PD-Child 6. $4,283,164.00 6. 0413
7. DD child including ID & ASD 7. $50,279,103.00 7. 0414
8. SED 8. $24,589,156.00 8. 0415
9. Mental Illness 9. $1,697.00 9. 0433
10. DD including ID & ASD 10. $70,855,809.00 10. 0484
11. Aging/Physical Disabilities 11. $30,147,566.00 11. 0485
Total Cost: $1,182,628,156
Vermont **Vermont did not operate 1915(c)
programs. They provided alternatives
to institutional services through
Section 1115 demonstration
programs.
(Centers for Medicare & Medicaid Services, 2013)
Katie Beckett Policy Proposal 20Exhibit 4. Waivers for Children: Utah & Idaho
Utah Idaho
Waiver # Children Cost for Children Waiver # Children Cost for Children
Covered Covered Covered Covered
Community 603 $22,339,076 TEFRA 1,411 $23,800,000
Services Waiver Developmental 2,428 $17,414,934
Technology 131 $97,081 Disability
Dependent Waiver Waivers: Act
Total 734 $22,436,157 Early &
Children’s DD
Waiver
Community 159 $1,760,000
Services Waiver
Total 3,998 $42,974,934
Katie Beckett Policy Proposal 21Exhibit 5. Financial Estimate (based on FY2013 Expenses)
Idaho Data
General % of Pop. < 18 # Served # Served as % Annual Cost Annual Annual Cost Total Program
Population Yrs. in of Pop < 18 per Child Parental Cost per Child after Cost
Program Yrs. Sharing1 Cost Sharing
1,567,652 26.7% (418,563) 1,411 .3% $16,867 $876 $15,991 $23,800,000
(Hanke, 2014)
Using the Idaho data, the Department estimates what a Katie Beckett Program in Utah might look like:
Utah Data
General % of Pop. < 18 Potential # # Served as % Program Cost Avg. Annual Annual Cost Total Program Approximate
Population Yrs. Served in of Pop < 18 per Child Parental Cost per Child after Cost State General
Program Yrs. Sharing Cost Sharing Fund Using 68
% FMAP
(Includes Service
and Admin
Costs)
2,763,885 31.1% (859,568) 2,580 .3% $16,867 $1,021 $15,846 $40,822,680 $13,022,458
Exhibit 6. Costs for Institutionalization (based on FY 2013)
Total Costs/year Number Served Costs/individual/year
State Hospital $33,954,309 206 $164,827
Technology Dependent Institution 131 $175,621
Average $170,224___
Total Institutional Cost for 2,580 $439,177,920
Potential Served
(Division of Services for People with Disabilities, Utah, 2014)
Exhibit 7. Division of Services for People with Disabilities Services & Wait List
DSPD # People Adults Children (0-18 Average Age New Service # People Percentage Average Age,
Report Served years) Average Age Waiting Waiting, Children Waiting
2013 5,267 86.5% 13.5% 34.5 23.8 1,892 44% 23.6
2012 4,985 85% 15% 34 22.8 1,940 48% 23
2011 5,011 82% 18% 33 N/A 1,825 43% N/A
2010 4,910 81% 19% 32 N/A 1,953 47% N/A
(Division of Services for People with Disabilities, Utah, 2010-2014)
Katie Beckett Policy Proposal 22References
Centers for Medicare & Medicaid Services . (2013). Medicaid Expenditures For Section 1915(c)
Waiver Programs In FFY 2011. Baltimore: Centers for Medicare & Medicaid Services .
Centers for Medicare & Medicaid Services. (n.d.). Retrieved
fromhttp://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-
Topics/Benefits/Medicaid-Benefits.html
Department of Human Services. (2012). Division of Services for People with Disabilities Annual
Report. Salt Lake City, Utah: Utah Department of Human Services.
Division of Services for People with Disabilities, Utah. (2014). Going the Extra Mile: Annual
Report 2013. Salt Lake City: Utah Department of Human Services.
Donaho, V. (2014, January 31). Mississippi Executive Services, Office of the Governor, Division
of Medicaid. (M. Peters, Interviewer)
Hanke, J. (2014, March 31). Public Records Request: TEFRA/Katie Beckett. (G. Pola-Money,
Interviewer)
Hecker, J., & Higgs, G. (2013). Arkansas TEFRA Wiver. Little Rock: Arkansas Division of
Medical Services. Retrieved from
https://www.medicaid.state.ar.us/Download/general/publicdata/TEFRAThirdQtr.pdf
Idaho Department of Health and Welfare. (2009, September 15). Newsroom. Retrieved from
Idaho Medicaid Revises Rules for Katie Beckett Program:
http://www.healthandwelfare.idaho.gov/AboutUs/Newsroom/tabid/130/ctl/ArticleView/
mid/3061/articleId/1491/font-size2Idaho-Medicaid-Revises-Rules-for-Katie-Beckett-
Program.aspx
Katie Beckett. (n.d.) Retrieved from http://mchb.hrsa.gov/about/katiebeckett.html
Kids as Self Advocates. (n.d.) Retrieved from http://fvkasa.org/reports/katie.php
Kinne, T. (2014, February). Idaho Financial Specialist, Division of Medicaid. (G. Pola-Money,
Interviewer)
National Institutes of Health. (2002) Retrieved from
http://profiles.nlm.nih.gov/QQ/B/C/X/Y/_/qqbcxy.pdf
New, J. (2014, February). TEFRA Waiver in South Dakota. (A. Lesmann, Interviewer)
New York Times. (2012) Retrieved from
http://www.nytimes.com/2012/05/23/us/katie-beckett-who-inspired-health-reform-dies-
at-34.html?_r=1&
Katie Beckett Policy Proposal 23http://www.parenting.blogs.nytimes.com/2012/06/06/because-of-katie-children-with-
severe-disabilities-can-live-at-home/
People Magazine (1981) Retrieved from
http://www.people.com/people/archive/article/0,,20080805,00.html
Tennessee Justice Center. (n.d.). Retrieved from
http://www.tnjustice.org/resources/optionsfortn/
The Gazette. (2012.) Retrieved from
http://thegazette.com/obituaries/beckett-mary-katherine-katie/
Waiver Families. (2012). History of Waivers. Retrieved from Save the MFTD Waiver!:
http://savemftdwaiver.com/about.html
Katie Beckett Policy Proposal 24You can also read
