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7-4 short paper: outcome measures vs. community outreach and | non100 | Southern New Hampshire University

After reading the report on services in Georgia, write a short paper that provides a summary of what it says. Explain how a market analysis was accomplished, how this information was used to determine the outcome of existing services, and how it was used to design services. Then provide an opinion on how this information could be useful in advocating for expansion of services.
Executive Summary
This report details the results of a mixed-method community outreach effort conducted by the Georgia Health Policy Center (GHPC) as part of The Community Foundation for Greater Atlanta’s Champions for Children with Exceptional Needs Initiative (Champions).
The purpose of this outreach effort is (1) to provide a systematic examination of the existing gaps in service and support for families with medically fragile and special needs children in Georgia and (2) to compile a list of service delivery options gathered from the community outreach efforts that could be provided to families through the funding of an appropriate nonprofit or network of nonprofits across Georgia. The report will be shared with The Community Foundation and the Champions Advisory Committee to guide them in the distribution of at least $2.2 million that has been appropriated by the Georgia Legislature to meet the needs of this population.
Data collection for the Initiative used both quantitative and qualitative approaches to explore the experience of families with special needs and medically fragile children. The quantitative component included a Medicaid claims analysis of children eligible for the Katie Beckett Waiver program during Calendar Year 2005. The qualitative data collection methods for the community outreach effort included:

Three focus groups with parents of special needs and medically fragile children;
Sixteen Key Informant interviews with parents, advocates, representatives from local andstate-wide non-profit agencies and medical providers;
Two community forums structured to present data collected in the needs assessment andoutreach and gather suggestions/feedback from community members regarding possible service delivery models.Medicaid Claims AnalysisFindings from the Medicaid claims analysis of children who received services through the Katie Beckett Waiver program in 2005 exemplify the needs of many medically-fragile children in Georgia. In Calendar Year 2005 (CY2005), there were 6,572 children enrolled in Medicaid through the Katie Beckett class of assistance. The descriptive analysis of the Katie Beckett enrollees found that:
95% (6,130) of the Katie Beckett children submitted at least one Medicaid claim during the year. The top two diagnoses, specific delays in development and psychoses with origin specific to childhood (infantile autism, disintegrative psychosis and schizophrenia) comprise 28% of all the outpatient claims.
The average Medicaid reimbursement per Katie Beckett recipient was $5,033 in CY2005. The services that Medicaid paid for the most were therapeutic services, prescriptions/medical equipment, and home services.
In addition to Medicaid, most Katie Beckett children also have some other insurance coverage. Of all the Katie Beckett children who used any Medicaid services in CY2005, 76% had at least one third party liability payment. For these children the average yearly third party liability claim is $2,878 while the Medicaid share averages $4,198.

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This descriptive analysis of Medicaid claims data provides a snapshot of the patterns of service utilization of children enrolled in the Katie Beckett Waiver program in 2005. The findings show that even those families with private insurance relied on Medicaid to pay a significant portion of expenses related to therapy, prescriptions, medical equipment, and home-based care.
Findings from the Community Outreach Effort
As part of the community outreach effort, the Georgia Health Policy Center conducted three focus groups with parents of medically fragile and special needs children. Focus groups were held both with families still receiving benefits under the Katie Beckett waiver program and those families who lost benefits after the change to the level of care determination process in 2005.
One-on-one interviews were conducted with sixteen Key Informants. The sixteen Key Informants who were interviewed as part of the community outreach process represent a wide range of stakeholder groups who have professional and personal experiences with medically fragile and special needs children and their families. In the presentation and description of the qualitative findings from the interviews and focus groups, the term “special needs children” is used to describe the support and service needs of medically fragile children as well as children with special medical and/or therapeutic service needs.
There was significant overlap and concurrence between the key themes that emerged from the parent focus groups and Key Informant interviews. Key Informants and parents who participated in the focus group discussions see the State as providing necessary direct support for important services such as therapies, home-based care, financial assistance for co-payments, prescription medications and durable medical equipment that are not otherwise covered through private insurance or available through non-profit organizations. This assistance usually comes to families through Medicaid and Medicaid waiver programs. They see the supports provided by the State to families as essential to the survival and development of medically fragile and special needs children.
Parents and Informants alike described the myriad of obstacles that families with special needs children face in caring for their children. Trying to meet the medical needs of their children is a constant struggle for parents, both financially and emotionally. When parents seek support from government, they are met with a complex system that appears to them to be inflexible and is extremely difficult for them to navigate. Parents brought all of their frustrations in dealing with the Katie Beckett Waiver program to the discussions about their struggles to obtain care for their children and when envisioning the most appropriate way to spend the $2.2 million allocated from the State Legislature. Their greatest hope is the decision reached regarding the expenditure of these funds will ease their burden rather than be yet another obstacle to receiving care for their children.
Key Informants and parents were asked to provide their ideas for how the funding allocated through the Champions Initiative could be best utilized to meet the service and support needs of families with medically fragile and special needs children. They provided some overarching principles they feel should guide allocation of the funding to non-profit agencies as well as more specific service and support models that should be prioritized for funding through the Initiative.
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The guiding principles proposed by Key Informants and parents can be classified into the following general thematic categories:

Determination of need and eligibility: The current level of funding allocated to this Initiative does not begin to come close to the level of funding that is needed to meet the service and support needs of medically fragile and special needs children across the State. In order to reach the most families, some Key Informants suggested that the funding be “reserved for parents who don’t have any other options.” They suggested that it may be necessary to limit the services or supports provided through the Initiative to a focused set of services, make services available to specified diagnoses groups, or provide support for a limited amount of time to each family served. Most of the parents who participated in the focus group discussion held a divergent view of the concept of establishing eligibility criteria for the services funded through this Initiative. Many are wary of services that require an eligibility determination process and expressed the sentiment that qualification for support should be based on the child’s need and not on the income of the family.
Eliminate red tape: Informants and parents stressed the importance of making access to the services or supports offered through the Initiative easy and free of cumbersome red tape and applications. Central to this concept of a simple process for obtaining support is the commonly expressed sentiment that the funds allocated by the Legislature should not be used to “set up another bureaucracy.” The funds should go to the direct support of children, not to pay for the administration of a program.
Early intervention: Early intensive and consistent intervention with special needs and medically fragile children is crucial to the development of their children and will reduce the financial supports required of the State when they become adults.
Equitable access: Services and supports must be accessible to families throughout the State and through multiple channels. The non-profit or network of non-profits that are funded to support families through the Initiative must have reach and presence throughout the State.
Sustainability: Key Informants feel strongly that in order for this Initiative to be successful, long-term support and sustainability must be built into the design. Children who are developmentally delayed or who have chronic medical conditions are not “cured with a year of therapy.” Their needs span a lifetime and require support across their development.Key Informants and parents were asked to envision and describe delivery models that would meet the unmet service and support needs of families through funding efforts by an existing non- profit or network of non-profits. They suggested an array of potential options that ranged from providing direct financial support to families to intervening at the systems-level to reorganizing the way that services are delivered to children with special needs in the State. The range of potential options can be categorized into the following general service and support approaches:

• Provision of flexible monies to parents for their children’s needs: Many Key Informants acknowledged that the biggest need for many families with medically fragile and special needs children is expanded access to direct services. Financial assistance to obtain therapies, durable medical equipment, prescription medications and respite care are in high demand and in short supply for many families.
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Creation of/expansion of a resource center that is a ‘one-stop shop’ for family- centered supports, information and referral: Funds could be used to expand upon existing family resource and information centers that are currently working to aid families as they struggle to navigate the complex State system and seek out community resources for their children. An ideal resource center would provide information for families, but would also be “hands on” and provide training and skills development to families and providers.
Provision of case management and service coordination: Families struggle to manage the complex medical, social and emotional needs of their children and could greatly benefit from having an individual assigned to help families navigate the public and non-profit sectors and provide case management and care coordination.
Expansion of programs offered through the public school system and the community to effectively transition children into adulthood: Many stressed the importance of the public school system in the delivery of services for special needs children and see the school as a potential intervention site for the provision of services funded through this Initiative. They spoke of the need to expand the quality and intensity of the therapies and other support programs provided through the schools to effectively prepare children to live as independently as possible in the community and direct their own care as adults.
Establishment of local, community-based networks of support for children, parents, professionals, and community allies: Informants spoke of the need to educate local communities about the needs of special needs and medically fragile children. Central to this concept is the principle of local communities being empowered to seek out local solutions for families. The focus of this effort would be to raise community awareness about the needs of these children and their families so that communities can respond accordingly with adequate local services and supports.
Coordinate advocacy for medically fragile and special needs children and their families: Parents suggested using the funds to hire advocates to bring their concerns to the attention of State policy makers. Informants also spoke of the need to “force change” in the system by using the earmarked monies to establish a legal fund for families seeking representation to compel the State to meet its obligations to medically fragile and special needs children as mandated under State and Federal statutes.Systems-level interventions: Work at the State level to encourage increased communication and collaboration across agencies that service families and children.
One of thediscussions was the need for change to occur at the systems-level within the State. Though this type of change process is beyond the scope of this Initiative, many parents and Informants feel strongly that the unmet service and support needs of families with medically fragile and special needs children cannot be adequately addressed in Georgia until key leaders in the political and state agency systems make significant changes to the way that services are delivered to families and children in the State. Suggested systems-level initiatives included: using the allocated funds as an incentive to bring state leaders to the table to begin talking about how to “de-silo” government’s approach to supporting families and ensure a more effective delivery of services; hiring a private firm to audit Medicaid and the Katie Beckett waiver application process to make
key themes that emerged from the Key Informant interviews and the focus group
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the process simpler for families and ensure a more efficient delivery of services; and establishing a separate unit within DFCS of case workers trained specifically to coordinate the care and provide information and referral assistance to families of children with special needs.
Though there was not one view of how best to utilize the funds allocated by the Legislature to serve and support these families, the Informants and parents were all of the opinion that whatever supports are put in place, that they be accessible to families of varying means across the State and sustainable over time. Everyone agreed that the current level of funding ($2.2 million) cannot meet the diverse and ever expanding needs of these families, but expressed hope that these funds can begin to strengthen the capacity of families and existing non-profit agencies to empower parents and communities to ensure continuity of care for these children across their lifespan.
The data collection methods implemented by the GHPC and described in this report are part of an ongoing community engagement process being undertaken by The Community Foundation for Greater Atlanta. The findings presented in this report, along with the community feedback gathered through The Community Foundation’s outreach efforts, will be presented to the Champions Advisory Committee and will be used to inform a process to develop a Request for Proposal (RFP). This RFP will define the parameters of a service and support delivery model for medically fragile and special needs children and their families in Georgia and invite non-profits and networks of non-profits to submit proposals to carry out the proposed programming model.
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Background
The Katie Beckett Waiver Program (also known as the Deeming Waiver) is an optional Medicaid waiver provided under the Tax Equity and Fiscal Responsibility Act (TEFRA). Under the TEFRA, states have the option to provide Medicaid to children age 18 and under at home who qualify as disabled individuals under the Social Security Act provided certain conditions are met. The waiver allows families who otherwise have incomes too high to qualify for Medicaid to enroll by waiving parental income and assets and considering only the child’s assets when determining eligibility. In order for a child to establish Medicaid eligibility under this program, it must be determined that:

If the child was in a medical institution, he/she would be eligible for medical assistance under the State plan for Title XIX;
The child requires a level of care provided in a hospital, skilled nursing facility, or intermediate care facility (including an intermediate care facility for the mentally retarded);
It is appropriate to provide the care to the child at home; and
The estimated cost of caring for the child outside of the institution will not exceed theestimated cost of treating the child within the institution1.In Georgia, the Department of Community Health (DCH) provides benefits through the Katie Beckett waiver to those children who meet the institutional level of care determination. In November of 2004, the process for determining the level of care for children applying for coverage under the waiver was adjusted to bring State practices in line with Federal regulations. Prior to this change, eligibility was determined using adult Activities of Daily Living (ADL) to assess eligibility of children, rather than the federally required pediatric criteria.2This change in the eligibility determination process narrowed the group of medically fragile children and families in Georgia who are eligible to receive assistance from the State through the Katie Beckett Waiver program. In State Fiscal Year 2005, more than 6,200 families who did not meet Medicaid’s income eligibility were able to receive supplementary financial assistance to cover essential expenses such as hospitalization, therapy, and adaptive instruments. Following the change in the eligibility determination process, 1,681 families lost coverage under the waiver.

1 Source: Georgia Department of Community Health, Division of Medical Assistance. Part II: Informational Manual TEFRA/Katie Beckett Deeming Waiver. Accessed online: http://dch.georgia.gov/vgn/images/portal/cit_1210/26/56/46098632Katie_Beckett_Manual.pdf2 Source: The Georgia Department of Community Health: A Snapshot of the Katie Beckett Program. http://dch.georgia.gov/vgn/images/portal/cit_1210/11/4/70650170Katie_Beckett-Fact_Sheet.pdf
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The Champions for Children with Exceptional Needs Initiative
In the 2006 Legislative Session, the Georgia General Assembly appropriated $7.6 million in the supplemental 2006 budget to help transition those families who are no longer eligible for the Katie Beckett waiver as a result of the change in the level of care determination process. $5.4 million was set aside as a one-time allocation of funds to help families purchase limited assistance. Any child that received assistance from the Katie Beckett Waiver program and was denied assistance on or after October 2005 because of a level of care decision was eligible to receive the transitional funds.3 Children whose cases were closed prior to October 2005 are not eligible. Eligible families received a card that functioned as a prepaid debit card in the amount of $2,600 for each eligible child. The funds could be used for any medically-necessary service and could also be used to purchase respite care from participating non-Medicaid providers.4
In addition to the $5.4 million allocated for transitional funding, the Georgia Department of Human Resources (DHR) committed at least $2.2 million to one or more nonprofit organizations that will 1) provide critical services to Georgia families no longer eligible for the Katie Beckett Waiver Program as well as other families with medically fragile and special needs children; and 2) identify additional financial and other resources from the private sector and other sources to serve this population in the future5. Any of the transitional funding not spent by the recipient families as of June 30, 2007 will be added to the $2.2 million earmarked by the Legislature for disbursement to a non-profit or network of non-profits.
DHR requested that The Community Foundation for Greater Atlanta assist in the development of a plan for administering and distributing these dollars. The Community Foundation convened an Advisory Committee made up of key stakeholders representing diverse constituencies within the State’s disability community. This Advisory Committee will provide consultation and perspective to The Community Foundation and has been tasked with identifying the service option that will be funded by the $2.2 million earmarked by the Legislature. This effort has been named the Champions for Children with Exceptional Needs Initiative (the Champions Initiative).

3 Source: Georgia House Bill 1026 Accessed online: http://legis.state.ga.us4 Source: Governor’s Council on Developmental Disabilities: Katie Beckett FAQs sheet. Access online: http://gcdd.org/publicpolicy5 The Community Foundation for Greater Atlanta Champions for Children with Exceptional Needs Initiative Fact Sheet
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Community Outreach Process
In an effort to determine how to best utilize the funds ($2.2 million) earmarked by the Georgia Legislature, The Community Foundation for Greater Atlanta contracted with the Georgia Healthy Policy Center to conduct a mixed-method community outreach effort. The purpose of this outreach effort is to provide a systematic examination of the existing gaps in service and support for families with medically fragile and special needs children in Georgia. The data gathered through this community outreach effort will be provided to The Community Foundation and the Champions Initiative Advisory Committee and will inform the creation of a Request for Proposal to fund a non-profit or network of non-profits to serve special needs children and their families. This report presents the resulting data gathered through the various outreach activities.
Data collection efforts included:

Medicaid claims analysis of children with the Katie Beckett Waiver aid category duringCalendar Year 2005;
Three focus groups with parents of special needs and medically fragile children;
Sixteen Key Informant interviews with parents, advocates, representatives from local andstate-wide non-profit agencies, and medical providers;
Two community forums structured to present data collected in the needs assessment andoutreach and gather suggestions/feedback from community members regarding possible service delivery models.The first section of this report presents a descriptive analysis conducted on Calendar Year 2005 Medicaid claims. The subsequent sections present qualitative analyses of key themes and perspectives gathered through focus group discussions, Key Informant interviews, and community forums. The presentation of the findings from the parent focus group discussions summarizes parents’ experiences seeking out supports and services for their medically fragile or special needs children and provides their perspectives on how to best utilize the funding allocated by the Legislature for the Champions Initiative. The presentation of the findings from the Key Informant interviews summarizes Informants’ views on the most significant unmet service and support needs of children and their families and presents perspectives on how to best utilize the allocated funds. Finally, the synopsis of the community forums presents participants’ reactions to a set of suggested principles that should guide the allocation of the funds and their views on proposed service and support delivery options for special needs children and their families.

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Katie Beckett Kids:Cohort Analysis Using Medicaid Claims Data, Calendar Year 2005
The Georgia Health Policy Center conducted a descriptive analysis of the Calendar Year (CY) 2005 Medicaid claims of children who received services through the Katie Beckett Waiver. The claims data are used to describe the demographics and primary diagnoses of enrolled children as well as to study their patterns of service utilization and the associated costs to Medicaid. This analysis provides a general illustration of the services and supports that may no longer be available to those families who lost coverage under the waiver program or for those families who were never eligible for coverage under the waiver.
Demographics
In CY2005, there were 6,572 children enrolled in Medicaid through the Katie Beckett class of assistance. Exhibit 1 on the following page shows the geographic distribution of the Katie Beckett enrollees by county of residence in CY2005. The map illustrates that most of the Katie Beckett children live around the Metropolitan Atlanta area and in large cities such as Augusta or Savannah.
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Exhibit 1: County of Residence
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Exhibit 2 presents additional demographics. Six to 12 year-olds comprise almost half of the children enrolled in the program (46%). Males (63%) are more likely to be enrolled in the program than females (37%). A majority of the Katie Beckett children are white (82%) and live in urban areas (82%).
Exhibit 2: Demographics
Gender
Fe m a l e Male 37%
63%
Race Missing
Residential Status
Rural 18%
Urban 82%
Program enrollment does not always equate to utilization. In CY2005, however, we find that 95 percent (6,130) of the children enrolled in Katie Beckett submitted at least one Medicaid claim during the year. Exhibit 3 presents the top ten outpatient diagnoses for the study year. The top two diagnoses, specific delays in development and psychoses with origin specific to childhood, comprise 28 percent of all the outpatient claims. Infantile autism, disintegrative psychosis, and schizophrenia are all conditions included in the psychoses with origin specific to childhood diagnosis grouping. In total, the top 10 diagnoses account for 63 percent of all outpatient claims.
Exhibit 3: Top 10 Outpatient Diagnoses for Katie Beckett Children
Age
0-2 13-19 7%
2 2 %
6-12 46%
Top Diagnoses
Other 3%
Black 1 4 %
1%

3 – 5 25%
White 82%

Rank Diagnosis Code

1  315
2  299
3  343
4  758
5  783
6  784
7  781
8  742
9  759
10  780

Description
Specific delays in developmentPsychoses with origin specific to childhoodInfantile cerebral palsyChromosomal anomalies 7.6% Symptoms concerning nutrition, metabolism, and development 5.4% Symptoms involving head and neck 5.4% Symptoms involving nervous and musculoskeletal systems 2.2% Other congenital anomalies of nervous system 1.6% Other and unspecified congenital anomalies 1.4%
Percent

17.4% 10.6% 10.4%

General symptoms
1.2%

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Medicaid Payment
Medicaid payments of children enrolled in the Katie Beckett program were also analyzed. The average Medicaid reimbursement per Katie Beckett recipient was $5,033 in CY2005, as shown in Exhibit 4. It was approximately two and one-half times as high as the average Medicaid payment for all children in Medicaid, which was $2,034 in CY2005. The services that Medicaid paid for the most were therapeutic services, prescriptions/medical equipment, and home services.
Exhibit 4: Medicaid Payment per Recipient

Type of Service
Therapeutic servicesPrescription / Medical Equipment Home serviceOutpatient Hospital /ASC/FQHC/ RHC Inpatient HospitalOther Outpatient CareMental HealthPhysician/ Nurse/ LabCase ManagementOtherTOTAL
Children with at least one Medicaid claim (N=6,130) Average Medicaid Payment per Recipient in CY05 $ 1,634$ 1,348$ 610$ 459$ 304$ 169$ 149$ 215$ 140$ 3$ 5,033

In addition to Medicaid, most Katie Beckett children also have other insurance coverage. Of all the Katie Beckett children who used any Medicaid services in CY2005, 76 percent had at least one third party payment.
For the 4,653 children with third party coverage, Medicaid paid for 88 percent of the expenses related to their therapeutic services and 99 percent of the expenses for their home care services (see Exhibit 5). Medicaid also paid for prescription and medical equipment services (41%).
Since the Medicaid reimbursement rate is usually lower than the private pay rate, if an enrollee is no longer eligible for Medicaid, the actual medical expense (and potential out-of-pocket costs) will be higher than the average Medicaid payment presented here. We may actually underestimate total payment for children with third party coverage since Medicaid claims data may not capture their complete third party payment information.
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Exhibit 5: Per Recipient Payment Breakdown by Medicaid and Third Party Liability

Type of Service
Therapeutic servicesPrescription / Medical Equipments Home serviceOutpatient Hospital /ASC/FQHC/RHC Inpatient HospitalOther outpatient CareMental HealthPhysician / Nurse/ LabCase ManagementOtherTOTAL
Generalizability
Children with Third Party Liability (N=4,653)

Medicaid Payment
$ 1,590 $ 1,065 $ 590 $ 286 $ 135 $ 132 $ 114 $ 132 $ 152 $3 $ 4,198
Third Party Liability
$ 210 $ 1,507 $ 8 $ 381 $ 408 $ 72 $ 16 $ 275 $ 0 $1 $ 2,878

The descriptive analysis presented here is representative of the claims filed by children enrolled in the Katie Beckett program in CY2005. While informative, they likely do not represent a complete picture of the service needs of all medically fragile children in Georgia since many eligible children may never enroll. Furthermore, the data presented in this analysis are from CY2005, reflecting service utilization reimbursed through Medicaid two years ago. For the most part, these claims occurred prior to changes in the Katie Beckett eligibility determination process. More recent claims data that would allow us to examine current utilization and compare enrollment and utilization before and after the eligibility changes are not available. As such, there is no way to determine in this analysis whether the families who continued enrollment in the waiver program had different patterns or levels of service utilization than those families who were deemed ineligible.
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Focus Groups with Parents of Children with Special Needs: Summary of Key Themes
As part of the community outreach effort, the Georgia Health Policy Center conducted three focus groups with parents who have children with special needs. A focus group held in Marietta included parents whose children had received benefits under the Katie Beckett Waiver program but were recently determined to be ineligible for those benefits. Parents whose children are currently eligible for benefits as well as those who have children that are no longer eligible participated in the Athens group. Only parents with children currently on the program attended the group in Decatur.
A total of 36 parents participated in these discussions. Their children have a wide range of illnesses and conditions such as autism, cerebral palsy, mitochondrial disease, blindness, auditory disorders, Asperger Syndrome, Down Syndrome, epilepsy, and others. Their children range in age from 2 to 19 years old. All but two parents reported having private health insurance coverage for their special needs child.
The objectives of the parent focus groups were to:

chronicle family experiences with the Katie Beckett Waiver program;
describe families’ experience seeking access to health care professionals and medical andtherapeutic services for their special needs children; and
hear parents’ ideas for how best to utilize the $2.2 million that was allocated by theGeorgia Legislature to support special needs children.The conversations were audio recorded and transcribed for the purposes of preparing this report. Interview transcriptions were coded using an inductive coding scheme that followed the objectives of the Focus Group Discussion Guide (See Appendix A- Focus Group Discussion Guide). After coding was completed, data were sorted by thematic codes and analyzed for key themes. The key themes that emerged from the focus group discussions are presented below.

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Experiences with the Katie Beckett Waiver Program
Utilization of Program Benefits
As would be expected from the range of their children’s needs, parents use benefits from the Katie Beckett Waiver program in a variety of ways. Many parents rely on these benefits to help with deductibles and co-pays as emphasized by the Athens mother who said, “The co-pays can put you under.” Many also use Katie Beckett funds to supplement a variety of therapies for their children. A Decatur woman noted:
My son gets speech and occupational therapy. We’ve been on Katie Beckett for a little over four years now, and he has been having intensive therapy. We’ve seen tremendous improvement since we’ve been able to access the program.
Additionally, parents use benefits to purchase hearing aids, glasses, durable medical equipment, and pay for nursing care, among other things. For some, access to medical specialists is the greatest benefit their child derives from being on the Katie Beckett program. One mother commented:
Access to medical services themselves is part of the thing that I am incredibly grateful for with the Katie Beckett Waiver. I know my family wouldn’t have the same ability to see many of the medical specialists that we are able to with waiver.
Parents whose children were determined to be ineligible for Katie Beckett received a $2600 debit card to assist in the transition. These parents reported using the funds from debit cards in much the same way as described above. One Cobb mother voiced the feelings of many others when she made the following comment about the debit cards:
The debit card gave you a lot more liberty to really decide for yourself what your child needed. Sometimes that’s a lot better than a program that allows you to get one of these or one of those or determines if you are qualified or you are not.
Many parents have been faced with making difficult treatment decisions since their children are not eligible for benefits. The following comments illustrate the hardships that many of these families are experiencing as a result of losing benefits:
We had to drop occupational therapy which she desperately needs.
Our deductible on our private insurance is so high that we couldn’t really reach the deductible to even get him therapy. He’s a year and a half to two years behind since we lost Katie Beckett.
My daughter has degeneration so eating certain things or smelling certain things bother her. I was able to take her to the class at Scottish Rite to work on feeding issues, but now we don’t do that any more.
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My child has not had occupational therapy for a year, and her hands are starting to curl up again. We do what we can do at home.
There was quite a bit that we gave up. He was getting outside speech therapy twice a week, and we had to give that up. We also had to cut back on his psychotherapy.
We have to pay between $400 and $500 more a month out of pocket for co-pays since we lost Katie Beckett.
Access to Services
Parents in all three focus groups reported difficulty in locating appropriate health care professionals for their children. While most have a primary care physician, access to specialists is problematic. They indicated that specialists are either not available in their area or will not accept Medicaid payment. A Decatur woman decried, “A lot of the therapy clinics are not taking Medicaid, and we have no place to go.” A second mother in that group added, “We live in Cherokee County and it is impossible to find services for special needs kids in Cherokee.” A third said, “Respite care doesn’t work for us because it is very hard to find respite care in Clayton County.”
An Athens mother observed that access to care is even more difficult for those who live in more rural areas. She said, “Because the volume is not here, a neurological pediatrician is not going to settle in Athens, Georgia.” Parents in that group reported driving to Atlanta, Cumming, Snellville, Alpharetta, and other locations to access services for their children. Program regulations also contribute to the problem of access, as explained by this comment from an Athens parent:
It’s a catch 22. If you can’t find anybody in your area that will accept your HMO, then you can’t get assistance from Medicaid because they won’t help if your insurance refuses to pay.
Parents complain that payment schedules and inefficiencies within the Medicaid system in Georgia exacerbate their inability to locate appropriate care for their children. A Cobb mother described the challenges of finding providers:
We’ve lost all of our in-home therapists because they were just not getting paid. The therapist would bill, and she would only get a percentage of what she billed. So, she decided not to work with Medicaid patients anymore.
An Athens mother echoed:
One of the main things that I have heard from doctors that my son has seen is the reason that they have dropped Medicaid is because the paperwork is so expansive, and it’s a lot less payment.
The Marcus Institute and Children’s Healthcare of Atlanta are the two institutions most often visited by the children of these parents. However, parents stated that Medicaid payments for
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therapeutic services provided by these institutions are increasingly limited because of the way Medicaid reimburses tertiary care centers. Parents described how Medicaid stipulates that hospitals like Children’s Healthcare may be reimbursed for therapies related to acute care, but not for long-term therapeutic services. Thus, many children have lost access to therapies provided by these institutions in-house. One parent described the loss of services provided by Children’s Healthcare as a “huge setback.” Parents fear that access to the specialized care their children require will get worse due to continued cutbacks and increased paperwork imposed on providers.
To help fill the voids in service access and coverage, parents seek support for their children from non-profit organizations and social service agencies. Some of these provide broad services that are relevant to most families, such as Parent to Parent of Georgia, FOCUS (Families of Children Under Stress), and Foundation for Medically Fragile Children. Others provide assistance to those with specific illnesses and conditions, such as Georgia Pines, Muscular Dystrophy Association, and Diabetes Foundation. In addition, a number of non-profit camps are available for special needs children as well as some respite programs for parents.
Bureaucratic Frustrations
These parents expressed a great deal of frustration with working through the State to obtain and maintain benefits for their children. They described a system that is bureaucratic, inconsistent in coverage, and bogged down with endless paperwork. Their many complaints include:

Department of Human Resources employees that are assigned to assist with the application process and the Department of Community Health personnel who administer the program lack complete knowledge about eligibility requirements, coverage provided by the program and other essential information
Forms are so complicated that physicians cannot properly complete them
Guidelines for what is and is not covered are unclear and constantly changing
The annual renewal process is cumbersome
There is all together too much paper workHere are some of their many comments about the state system that administers the Katie Beckett Waiver program:I’ve got to fill out 100 pages of paper again to prove my child still has cerebral palsy.When the State plan says we are only going to give you eight units of physical therapy or only eight units of speech therapy, that is against the law because the federal law says the State must cover whatever is necessary to correct the problem.I think it is unfair that when you have doctors, nurses, and therapists saying that a child needs something to either make her more comfortable or improve her condition a lot, that Medicaid can turn around and say, “No.” I don’t think they should be given the right to deny coverage for something that a medical professional says the child needs.

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Nobody is on the same page.
The providers have no idea what services they are supposed to provide, and the beneficiaries have no idea what services they are entitled to receive.
We were getting five therapies a week before the cuts. Now we get six a month. The application process is too difficult for families.
The annual renewal process is ridiculous. My child is MR [mentally retarded] and has cerebral palsy and lung disease. Next year he is still going to have MR, cerebral palsy and lung disease.
It’s very difficult to access anything on the State government website.
You have to do everything paper wise. Everything has to be documented through the doctor’s office. You have to deliver the paperwork and pick it up and mail it. And, you have to pay the doctor to fill it out.
We went through the people in the county losing our application. It’s a rural county, and there was one caseworker that serves three counties to help with Katie Beckett. It was just a nightmare.
Additionally, parents whose children remain eligible for the Katie Beckett Waiver program fear a loss of benefits and the subsequent impacts on their special needs children. A Decatur mother said with exasperation:
All of these changes have been horrific. We’ve had one child denied and reinstated. I have two more reviews at the end of this month, so it’s always a guessing game.
The burden falls to the parents
It is clear from the conversations with these parents that they must assume additional roles of case managers and advocates in order to obtain services for their special needs children. Parents report having to constantly search for services and specialists for their children because information is not readily available to them. Almost all who attended the focus groups said that they had learned about the Katie Beckett Waiver program almost by accident. A mother from Athens described how she learned about the program: “The way I learned about Katie Beckett was in the waiting room at the therapy class.”
Neither doctors nor hospitals provide information to parents with special needs children as illustrated by the mother who lamented:
There are no posters, no anything about disabilities in my pediatrician’s office. There’s no information about the organizations in Georgia that can help a parent with a child like mine.
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In actuality, parents often find themselves in conflict with providers regarding diagnosis and treatment of their children. A mother explained:
I am the case manager and that is something that I tell every doctor I see. I don’t have an MD behind my name, but I am this child’s case manager. I understand my child much more than any doctor.
Taking care of a special needs child affects all aspects of the family’s life and can have a significant impact on the parent’s employment. Many reported having lost jobs or not being able to work at all so that they can tend to the needs of their child. They also express anxiety because other children in the family do not receive the attention they need and deserve because of the demands of taking care of the special needs child. A Marietta mother expressed this concern:
You know a lot of the responsibility falls to the parent to try to give therapy to your own child. I’m not qualified to do that, and I have another child too that I need to care for.
One parent summed up the sentiments of many of the parents when she said:
As parents of special needs children we are the health advocates for our children, and as such we have found ourselves in positions where we have to leap through incredible hoops and paperwork and red tape to a point that is beyond anything that you could really believe to get a proper diagnosis or to get proper care.
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Suggested Guiding Principles for the Allocation of the Funding
When asked how they would utilize the $2.2 million allocation from the Legislature, the parents’ first reaction was that the money allocated is insufficient to meet the needs of children like theirs across the State. A woman from Athens stated: “That doesn’t sound like hardly any money for what is needed.” As they spoke about the money available, they began to articulate parameters that should be placed on the utilization of the funds that can be considered guiding principles. The principles described by parents can be categorized as follows:

Focus on early intervention
The child’s needs should be the primary consideration for support
Eliminate red tape when possible
Maximize the funding that goes directly to childrenFocus on early interventionThroughout their conversations, parents commented on the importance of early intervention for special needs children. All agree that therapies and services in the earliest stages of diagnosis are crucial in the development of their children. Given the wide range of their children’s needs, early intervention is the one area that all found in common, as expressed by their comments:I like the idea of early intervention. Early intervention gave me information.I would make sure that there was early intervention and help in getting people started on knowing what to do with the child who has special needs.It’s hard because we are so diverse. I guess if there is one thing we have in common, its early intervention, which is the only thing that really ties us.Early intervention is the best way that you can spend that money because the State of Georgia is going to have a terrible problem when all of these kids become adults.Base qualification for support on the needs of the child rather than the income of the familyParents are adamant that the qualification to receive support from the Legislative allocation should be based on the needs of the child rather than family income. Caring for a special needs child can tax the incomes of low, middle and high income families due to the high cost of care and intensity of care needed to support these children. Parents believe it would be unfair to have family income as criteria for receiving assistance. One parent summed up this commonly- expressed sentiment:You know, you reach a point where it really doesn’t matter what you’re making if all of your money is going to medical care for your child. You’re still going to be poor. So, my only thing would be please don’t put an economic standing on it. It should be based on the need of the child.

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Make the process of obtaining support as simple as possible and eliminate red tape whenever possibleAs previously noted, these parents are extremely frustrated with the bureaucracy that governs the Katie Beckett Waiver program. They do not want another system with unending paperwork to oversee the distribution of these new funds, as expressed by the parent who said:
If it can be simple and easy and give direct information for families, I can’t think of anything that would be more refreshing.
Maximize the funding that goes directly to the children
Parents were apprehensive about the mechanism for distributing the allocated funds. They fear that too much money will be devoted to the administration of the program and not on providing services to their children. Since they are concerned that the money allocated is insufficient to meet the need, they want as much money as possible to reach the families who need the support. They especially do not want the money used to create a new non-profit organization because “there’s a lot of money and time wasted in start up.” One parent spoke for many when she said, “I think that the point is getting the money back to the children.”
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Suggested Service and Support Options
Parents were asked for their suggestions for how the Legislative allocation could address the unmet needs of families like their own throughout the State. They proposed a number of service and support options that fall into five general categories:

Provide flexible money to parents for their children’s needs
Establish a resource center for family-centered support services
Provide services that support transition to adulthood
Coordinate advocacy for medically fragile and other special needs children and theirfamilies
Make system-level changes in the StateProvide flexible money to parents for their children’s needsBecause of the varied needs of their children, parents would like access to funds that can be used at the discretion of the parent. Some may need assistance with deductibles and co-pays, others may need specific equipment, materials or supplies, and still others may want to send their child to a special camp or school or pay for respite care. Consequently, they propose either directly distributing the funds similar to the debit cards that were given to the families of children that were deemed ineligible or giving the funds to a foundation that would provide cash allocations to families. Their comments on this option included:I would like to be able to make the choice for my daughter. If I have to make the choice between a wheelchair and medications, I can live with that because she is my child. I think you should just disburse it to the family.I like the idea of the card because it gives you the option of choosing. You don’t have to worry about what your insurance will cover.Establish a resource center for family-centered support servicesParents shared common experiences in seeking information about available support and programs that could be helpful to them in caring for their specials needs child. While they acknowledged that a lot of information may be available, parents assert that they must be aggressive in seeking out the information because it is not readily accessible. To address this problem, they suggest a resource center that would be a clearinghouse for all families with special needs children and one that would “help people navigate through the system.” Such a resource center would not only provide information but also “organize parents who have been through it [having a child diagnosed with special needs] to help parents who are newly going through it.” While parents want a web-based information system to be an essential part of the proposed resource center, they also acknowledged that many families do not have adequate access to the technology needed for this service to be of benefit to them.Provide services that support transition to adulthoodParents with older children worry about the future of their children when they become adults and no longer qualify for the Katie Beckett Waiver program and other supports that are only made available to children of certain ages. These parents would like to see the allocated funding

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devoted to a program that would assist them in transitioning their child into adulthood. An Athens mother explained:
I would like to see some sort of help in transitioning from Katie Beckett Waiver to adulthood. At 22, we are entering all new territory without the Medicaid waiver. We don’t have any adult services. I’m looking at the fight that I have had behind me and bracing for another one to come.
Coordinate advocacy for medically fragile and other special needs children and their families
Parents do not believe that those who make decisions about program funding understand enough about the challenges of caring for special needs children. Several parents want funding earmarked for assistance with advocacy in bringing their concerns to the attention of policy makers, specifically State Legislators. Some propose using the money to train parents to be better advocates:
Let’s give the money to Partners in Policy Making, and they can teach all the parents how to scream louder so the Legislators will know what our needs are.
Others proposed using the money to hire a lobbyist to advocate on their behalf. One Decatur man suggested “hiring a professional who is familiar with state and federal laws that can protect our children.”
Make system-level changes in the State
Many parents assert that special needs children will never receive adequate support until there are fundamental changes in the State-level system. They are steadfast in their belief that the available funding be used to address what they perceive to be fundamental flaws in the administration of the Katie Beckett Waiver program. Their specific suggestions on how to improve the program include:

Research how the Katie Beckett program is administered in other states and incorporate the best practices into the Georgia program
Hire an independent company to audit the program to simplify the application process and make operations more efficient
Establish a training program for DFCS case workers that would provide them with a comprehensive understanding of the program.
Assign one trained caseworker in each DFCS office to be the single-point of contact for families with medically fragile and special needs children.Here are some of the many comments made by parents regarding these suggestions:Bring in people from other states, and let’s figure out what good things they are doing, what bad things they are doing. Let’s take out all the bad things that we are doing and find out the good that we are doing and see if we can create a program that actually provides services that children need.

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One of the biggest hassles with Katie Beckett is the fact that just about the time you’ve gone through the process; you have to do it again. Could some of this money be used to make the process easier?
Pulling a few people from the State and really educating them about Katie Beckett would be a huge, huge deal. These people are supposed to be guiding us, but they know nothing.
Let’s get a private company to come in and make sure that everybody can communicate. They could find the problems and help get rid of the red tape and do some checks and balances.
I think it’s real important that we get an outside person, a private company involved.
Let’s go see what other states are doing because obviously we [in Georgia] are failing miserably. We don’t have clue.
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Key Informant Interviews: Summary of Key Themes
As part of the community outreach effort, the Georgia Health Policy Center conducted one-on- one interviews with sixteen Key Informants. The Key Informants were identified by members of the Champions Initiative Advisory Committee as individuals who were knowledgeable about, and had direct experience with, medically fragile and special needs children and their families. The Key Informants represent multiple stakeholder and key constituency groups: local and statewide non-profit organizations serving special needs and medically fragile children and their families, medical and therapeutic service providers, parents, advocates, and representatives from various State agencies that coordinate the delivery of services to medically fragile and special needs children.
The objectives of the interviews were to:

–  identify existing resources and programs available to families of special needs andmedically fragile children living in Georgia;
–  identify and describe service gaps and critical unmet service and support needs of thesechildren and their families;
–  explore models of service provision and other supports available to families in otherstates in the country; and,
–  gather suggestions on what types of supports and services should be funded by theChampions InitiativeData Collection and AnalysisThe Key Informant interviews were conducted in person or over the telephone. When feasible, the interviews were recorded and transcribed verbatim. Where tape recording was not possible, in-depth written summary notes were taken. Both interview transcriptions and summary notes were initially coded using an inductive coding scheme that followed the objectives of the interview guide (See Appendix B- Key Informant Discussion Guide). A second level of coding was completed using a set of deductive codes that were developed based on themes emerging from the Informant interviews. After two rounds of coding were completed, data were sorted by thematic codes and analyzed for key themes. The key themes that emerged from the series of Key Informant interviews are presented below.

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The State of Our State:The Current Landscape of Support and Services Available to Special Needs Children and Their Families in Georgia
The role of the State in delivering services and support to families
Informants said that the main focus of the State delivery of medically-focused supports and services were Medicaid services like the Katie Beckett waiver and the Georgia Pediatric Program (GAPP) for medically fragile children who meet income eligibility for Medicaid. Eligible children who are developmentally delayed or disabled may receive home and community-based services through the Mental Retardation Waiver Program (MRWP).
Informants often mentioned the value of the Babies Can’t Wait service delivery system for families of children with developmental delays or disabilities. Parents and providers alike see the Babies Can’t Wait program as an important resource for parents as well as the children served by the program because it is designed as a family-centered model that trains and empowers the family to identify and engage services for their children. One parent interviewed described the Babies Can’t Wait program as an important resource for parents who have just received a diagnosis for their developmentally delayed or disabled child:
You know, if I hadn’t had Babies Can’t Wait when my daughter was younger, I would have never gotten for her what she needed as quickly. Having the service coordinator come in, because when you are a parent and you find out that something is drastically not right with your child and that it is probably going to be a lifelong ordeal, you are so overwhelmed that you become so stressed, it’s hard to even think. You hear so many different options. It sure is nice to have somebody come in and go, ‘Here. And here is the route you take to get there.’
However, many Key Informants also expressed concern about the changes and challenges that the Babies Can’t Wait program is currently facing. Parents and providers alike are worried that the program has been “dumped into a CMO (care management organization).” They perceive that the paperwork required of the participating providers is so burdensome and the reimbursements are so low that Babies Can’t Wait service coordinators are leaving the program. One Informant expressed dismay over watching “service coordinators leaving the program in droves because they can’t get reimbursed for their work.”
The Katie Beckett Waiver Program: Patterns of utilization and available supports
Georgia is one of 21 states in the country that opted to implement the Katie Beckett program under the TEFRA. Key Informants say that the Katie Beckett waiver is an important resource for those families that qualify for assistance and think that it is important that the State of Georgia recognizes the need for the waiver program. Key Informant perspectives on the utilization of the Katie Beckett waiver reflect the Medicaid claims analysis reported earlier in this report. The waiver is used primarily to pay for therapies (occupational, physical, and speech) that are not covered under private insurance plans as well as to help families pay for prescription medication and medical appointment co-payments.
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For many families, having the Katie Beckett waiver provides them with “peace of mind” because they know that they will not go into financial ruin trying to get the medical care that their children need. One Key Informant described the program this way:
It is a very important tool on a lot of different levels − financially, medically and emotionally for parents who are dealing with these issues. It is a financial safety net for families who are a hairs breath way from a weekend of medical crisis, who have medical issues that could take the family into bankruptcy. For families of all incomes, it is a way to ensure that when they are in the midst of dealing with those unexpected medical costs that they don’t have to worry about what their private insurance pays…Katie Beckett is a safety net.

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