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.
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:
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.
The guiding principles proposed by Key Informants and parents can be classified into the following general thematic categories:
• 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.
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 the
discussions 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
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.
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:
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.pdf
2 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
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.us
4 Source: Governor’s Council on Developmental Disabilities: Katie Beckett FAQs sheet. Access online: http://gcdd.org/publicpolicy
5 The Community Foundation for Greater Atlanta Champions for Children with Exceptional Needs Initiative Fact Sheet
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:
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.
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.
Exhibit 1: County of Residence
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
Fe m a l e Male 37%
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
0-2 13-19 7%
2 2 %
Black 1 4 %
3 – 5 25%
Rank Diagnosis Code
Specific delays in development
Psychoses with origin specific to childhood
Infantile cerebral palsy
Chromosomal 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%
17.4% 10.6% 10.4%
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
Prescription / Medical Equipment Home service
Outpatient Hospital /ASC/FQHC/ RHC Inpatient Hospital
Other Outpatient Care
Physician/ Nurse/ Lab
Children with at least one Medicaid claim (N=6,130) Average Medicaid Payment per Recipient in CY05 $ 1,634
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.
Exhibit 5: Per Recipient Payment Breakdown by Medicaid and Third Party Liability
Type of Service
Prescription / Medical Equipments Home service
Outpatient Hospital /ASC/FQHC/RHC Inpatient Hospital
Other outpatient Care
Physician / Nurse/ Lab
Children with Third Party Liability (N=4,653)
$ 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.
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:
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.
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
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.
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:
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.
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.
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:
Make the process of obtaining support as simple as possible and eliminate red tape whenever possible
As 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.”
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:
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:
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.
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:
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.
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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