The Child Advocate’s Report on Improving Access to Care for Children with Special Health Care Needs: State Health Insurance Options



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The Child Advocate’s Report on

Improving Access to Care for

Children with Special Health Care Needs:

State Health Insurance Options

Katherine Johnson, Candidate for MPH

Nadine Kronfli, Candidate for MPH

Josh Pashman, Candidate for MPH

Sara Shamos, Candidate for MPH

Moira O’Neill, MSN/MPH Editor

August 2006

This report is the product of a collaboration between the Office of the Child Advocate and the Yale School of Medicine, Department of Epidemiology and Public Health: Community Health Planning Class.



Executive Summary:

There is a 2001 estimate of 118,517 children with special health care in the state of Connecticut. Of those children, large percentages are un- or underinsured (up to 40% at any given time). Without financial resources to access care, children’s conditions may exacerbate, family resources may be exhausted and many children are at risk for institutionalization at great cost to the child and the state. Flexible options to supplement existing insurance coverage can make a significant difference in the future of a child and conservation of state resources. This report explores four options to optimize resources and improve access to care for Connecticut children with special health care needs.



  1. Take advantage of the TEFRA option by abandoning the 209(b) status and, extending Medicaid eligibility to children with severe medical needs who meet the SSI definitions of disability, regardless of their parents’ financial status.



  1. With Recommendation (3) below, redefine health status eligibility requirements in the 1915c Katie Beckett waiver to resemble those of Illinois, which limit eligibility to children deemed medically fragile or technology dependent. Currently, the State must budget funds for all slots on the waiver, regardless of whether or not a given child will need medical services. This would save the State’s most comprehensive health care coverage for children with special health care needs most in need of expensive treatment. Connecticut could ultimately institute multiple 1915c waivers of this type to cover all underinsured children who are medically fragile or technology dependent.





  1. Simultaneously design another 1915c waiver to target underinsured children with less complex care needs, who would not be covered by the options outlined in Recommendations (1) and (2) above, and whose families’ incomes exceed Medicaid eligibility. This program should have no income cap, but should require premiums on a sliding scale. This waiver could provide a limited selection of in-home support services and pay for care not covered by the child’s private insurance.




  1. Using unspent Title XXI state children’s health insurance plan (SCHIP) funds, develop a program of supplemental wrap-around services for children with special health care needs.

Children with special health care needs, as defined by the Maternal and Child Health Bureau (MCHB) in 1994-5, are “...those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”1 Recognizing the varied and unique health care requirements of children with special health care needs, the MCHB developed this definition with the purpose of helping states develop and implement comprehensive, community-based systems to serve children with special health care needs and their families, as mandated under Title V of the Social Security Act.

Prevalence of Children with Special Health Care Needs

Prior to 2001, the United States’ data regarding the prevalence of children with special health care needs was limited, making it difficult for researchers, policymakers, and program planners to initiate change and develop comprehensive programs addressing their specific needs. The 2001 National Survey of Children with Special Health Care Needs 2 (See Appendix A) represented the first source of data documenting the population. This survey provides detailed information on the self-reported prevalence of children with special health care needs both nationally and within each state, the demographic characteristics of the children, the types of health and support services needed to assist them and their families, and their access to and satisfaction with the health care they receive.

Based on the 2001 Survey, there are 118,517 children with special health care needs in the state of Connecticut. This represents 13.9% of all children in Connecticut and exceeds the national prevalence of 12.8%. This population has undoubtedly grown since 2001 due to advancements in neonatal care and improved survival rates for complex pediatric conditions. The Survey found that prevalence by age differed slightly with 9.2% of children with special health care needs between the ages of 0-5 years, 15.4% between the ages of 6-11 years, and 17.1% between the ages of 12-17 years. These age demographics have direct consequences on the types of services requested by each child, which will be addressed by this paper. Of particular interest, the prevalence of Connecticut’s children with special health care needs increases in tandem with the Federal Poverty Level (FPL), whereby 12.4% of those in Connecticut are from homes between 0-99% of the FPL, 14.2% from homes between 100-199% of the FPL, 14.6% between 200-299% of the FPL, and 14.5% are from families exceeding 400% of the FPL. These statistics again surpass their national counterparts – 13.6%, 13.6%, 12.8%, and 13.6%, respectively. Due to statistics like these and experiences of families above 400%, Connecticut should make a concerted effort to target its programs to families up to 400% of the Federal Poverty Level to ensure equitable and adequate access to health care services required by the children.3

Health Insurance Coverage

Despite the fact that health insurance is essential for ensuring access to care for all children, the 2001 Survey illustrated the lack of adequate coverage for Connecticut’s children with special health care needs. In the state of Connecticut, 8.7% of them lacked coverage at some point in the past 12 months, 2.0% completely lacked insurance, and 33.4% had inadequate health insurance. The parents of Meghan, one Connecticut family of a child with special health care needs, “have private insurance, however (it) does not cover all of Meghan’s expenses (whose) medical costs (for) routine care exceed a quarter of a million dollars per year” to provide “visits to her pediatrician, her cardiologist, her gastroenterologist, her orthopedic surgeon, her neurologist, and her endocrinologist,” and additionally, “…care from a home health aide that costs about $20,000 per year, ...feeding tube equipment costs over $10,000 per year, …and medications … (which cost) over $4,000 per year.”4 In fact, even some families like the Ives’, who have two full-time incomes and excellent health insurance, are still “stretched … to the breaking point.”5 Children from low-income families are twice as likely to be uninsured than those with family incomes at least twice the FPL, and among families with children who have special health care needs living below the FPL, two-thirds are covered through public programs that include Medicaid and the State Children’s Health Insurance Program (SCHIP).6 Furthermore, children with special health care needs from low-income families were not only less likely to be insured when compared to high-income families, but that their insurance coverage was significantly insufficient. There are also great socio-economic and racial discrepancies in insurance rates which is significant since Hispanics comprise 11.2%, non-Hispanic Whites 15.1%, and non-Hispanic Blacks 11.7% of the state of Connecticut’s children with special health care needs. These findings require attention when developing programs to increase access for Connecticut’s underinsured families living with children in need of complex health services.



Health Care Needs and Access to Care

Children with special health care needs require a broad variety of services, ranging from primary and specialty medical care to prescription medications, medical equipment and specialized therapy. In addition to the child’s specific health care needs, their families may need additional services, such as respite care or family counseling. Yet, “there are many barriers to community supports for children with special needs: insurance costs, limits on insurance benefits, and insurance denials.”7 The need most often cited by families in the 2001 National Survey was prescription medication; nearly 88% of children with special health care needs require some sort of prescription drugs, while just over half require the care of medical specialists. Other services required by a significant number of the children included vision care (36%), mental health care (25%), medical supplies (25%), and physical, occupational, or speech therapy (24%).8 Needs vary greatly by age, with children five years or younger being more likely than older children to need home health care (10% compared to less than 4% of adolescents), medical equipment (21% compared to 7% of adolescents), and home health aids (10% versus 4% of adolescents). Conversely, adolescents (ages 12-17) are more likely to require mental health services (31%, compared to 9% of those aged less than five) and mobility aids (6%, compared to 2%).9 In Connecticut, 11.7% of children with special health care needs were reported to need at least one health care service that they were unable to obtain during the past year. Dental services were most commonly reported as needed, but not obtained. Other services commonly reported as needed, but not obtained included mental health services (4.6%), specialist care (3.7%), and therapies (2.6%). According to the State of Connecticut’s Office of the Healthcare Advocate, Connecticut families, even those with private insurance, frequently cite their inability to obtain much-needed therapies for their children, including physical, occupational and speech therapy.



Impact on Families

In addition to meeting their children’s special health care needs, families can often benefit from services that help them manage the work associated with their children’s conditions. But due to limited service coverage “sometimes parents who cannot afford insurance are forced to make terrible decisions.  Some families cannot get their child out of the hospital because they cannot afford the cost of care, or are on a wait list for a Medicaid Waiver.  Parents sometimes end up divorced and then, ironically, the mom may be eligible for Medicaid.  Parents sometimes place their child in the State’s custody or the child is in the Hospital for Special Care and that child cannot come home because the services are not affordable or available.”10 The 2001 National Survey determined that family counseling is the support service most commonly needed - followed by respite care, among families of children with special health care needs. In Connecticut, 3.3% of families reported needing, but not obtaining family support services. The ability to receive necessary specialty care, which often requires a referral, is an important measure of access to care; 18.8% of families with children with special health care needs in Connecticut reported difficulty obtaining a referral for specialty care. According to the National Survey, 8.5% of these children in Connecticut do not have a usual source of care, which includes access to a doctor’s office, clinic or health center, or an emergency room. Since their health conditions and risks faced are often chronic and complex, having a consistent source of care is particularly important. Therefore, when evaluating access to care, the Survey sought to determine whether children have a single health care provider who is familiar with the child’s condition and requirements. In Connecticut, 7.1% of children with special health care needs lacked a single health care provider. Additionally, correlations exist between poverty level and lack of consistent health care provider, thus demonstrating that a significant portion of children with special health care needs in Connecticut lack adequate access to care.

A study conducted in the District of Columbia explored the association between access to care and unmet needs among children with special health care needs and their caregiver’s mental health status.11 Researchers concluded that children whose caregivers experience symptoms of depression are significantly more likely to encounter difficulties obtaining necessary medical and mental health care services. They also found that children with poor psychological adjustment are more likely to experience unmet needs for medical and mental health care services, thus underscoring the importance of both caregivers’ and the children’s mental health statuses as possible barriers to care. Consequently, policymakers must address the mental health status of the children and their caregivers as potential avenues to increase overall access.

Due to the limited financial supports and numerous restrictions on health insurance coverage for home and community-based services, Connecticut’s children with special health care needs are at a high risk of institutionalization. Despite the commitment to deinstitutionalization in the 1970s, an increased number of children are being placed in foster care, hospitals, and out-of-state facilities. This is occurring even though according to families, “it costs more to keep a child in a hospital setting that in the community. Look at one day in the hospital. Room and board costs $5000 in the hospital versus 24hrs of shift nursing at $42/hr or $1008 a day. Do the math. It makes more sense to support our children at home.”12 This is largely due to the failure of the State’s system to support the family at home. Studies have shown that children confined to institutions suffer from developmental delays, mental and physical deficiencies, and create higher levels of stress for family members.

Currently, there are few sources of health care financing assistance for children with special health care needs in Connecticut. They include the Katie Beckett Waiver and a re-insurance program for the purchase of additional insurance. A third resource, the Home and Community Based Waiver (HCBW), is available to only a limited number of children who meet the eligibility criteria (IQ below 70) for services from the Department of Mental Retardation. The HCBW allows access to Medicaid for children who meet diagnostic and family income eligibility. Alternatively, the Katie Becket Waiver allows access to Medicaid according to the child’s income versus the family income. An eligible child would also have to meet the criteria for nursing home placement, although such placement is not required as long as care costs are “cost neutral”, or less than the cost of institutionalization. However, the state of Connecticut only allows 180 children to enroll on the waiver. There is currently a wait list of approximately three to four years13. The Re-insurance program is very costly; parents must pay a premium that can be astronomically high. It also has rigid eligibility requirements and precludes any families who already have health insurance coverage. In the past several years, there have not been more than three children able to benefit from the program.. The only other option for families is to “spend down” their income on health care costs to meet income-eligibility for Medicaid. However, even that financially devastating strategy is only temporary if the family continues to work and income recovers in any way.

Approximately 18% of families with children with special health care needs in Connecticut have financial problems as a result of their child’s condition, while 28.3% of the children have had their condition affect the employment of family members. Furthermore, 12.3% of surveyed families had to spend $1,000 or more in medical expenses during the previous year, and 11.3% of families have spent 11 or more hours per week coordinating care.14 This has forced a growing number of families to resort to transferring custody of their children to the state child welfare system (Department of Children and Families, DCF) or in few cases to placement through the Department of Mental Retardation. In Spring 2006 there were approximately 400 children in DCF out-of-home state placements, with an increasing number in institutional settings, an inferior alternative to home-based care. Improving access to publicly subsidized health insurance would ensure that children remain at home in the care of their families.


SSI and TEFRA

In most U.S. states, children who receive Supplemental Security Income (SSI), an income benefit for people with disabilities, are automatically eligible for Medicaid. However, Connecticut is among twelve states that apply more limiting standards than SSI with regards to eligibility by utilizing the federal so-called 209(b) option. This option allows states to use their own assistance rules rather than the Federal SSI rules in order to determine Medicaid eligibility for children with disabilities.15 Connecticut is the only state that covers children who are blind in the disabled-related SSI Medicaid coverage category while excluding all other children with disabilities.16 Children under 19 years of age with disabilities are thus not considered “disabled individuals” in Connecticut.17 This regulation does not typically limit Connecticut’s low-income children from being eligible for Medicaid due to the multiple low-income pathways. The 209(b) option does prohibit Connecticut, however, from being able to implement the Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA).

TEFRA is a state plan option that allows states to make Medicaid benefits available to children less than 19 years of age with disabilities, regardless of their parents’ finances. This program is available to children with special health care needs who are not eligible for SSI benefits due to their parents’ income or resources; only the child’s finances are used to determine eligibility. TEFRA provides the full range of services covered by Medicaid to children who would otherwise require an institutional level of care (intermediate care facility-MR, nursing facility, or hospital care), but live at home.

Twenty States currently use the TEFRA option to provide comprehensive Medicaid coverage to underinsured children with special health care needs who would otherwise be institutionalized and whose parents’ income exceeds Medicaid eligibility. While TEFRA covers a similar population as the Katie Beckett waiver, it is a state plan option not a waiver and thus has no extraneous limits.18 TEFRA covers a relatively small number of children, averaging only 1,230 children per state with a wide range from 10 to 4,300 children.19 Since many children have other insurance options, TEFRA is the payer of last resort; a study in Minnesota found the cost per child for Medicaid was only $8,100.20 TEFRA creates an entitlement for all children who qualify ensuring that no child is excluded based on limited State resources, medical diagnosis or another arbitrary reason.21 To take advantage of the TEFRA option, Connecticut would have to discontinue the 209(b) state option.



Section 1915 c

Federal waivers permit states flexibility in Medicaid programs by allowing deviation from certain mandates of the Federal Medicaid statute and regulations. Waivers allow thousands of children with special health care needs without adequate health care services to qualify for Medicaid.22 The Medicaid Model Home and Community Based Waiver (under Section 1915c) is particularly important as it creates a pathway for Medicaid to cover health care services as an alternative to institutionalization.23 Each waiver differs in eligibility requirements and services offered. Currently, Connecticut has five 1915c waivers, only one of which extends services to children, known as the Katie Beckett Model Waiver – and that is only available to a limited number of children. While such waivers can be limited in scope, many States have used them to fill unmet niches in the Medicaid programs or to cover vulnerable populations.

States must demonstrate cost neutrality of each 1915c waiver, yet the advantages incurred by both the State and its citizens can be great. Kansas, New York and Vermont offer clear examples of the potential financial savings of home and community based waivers: “$12,900 per child for home and community-based services in Kansas (2001), $23,344 in Vermont (2001), and $40,000 in New York (2001), as compared to per child institutional costs per year of $25,600 in Kansas, $52,988 in Vermont and $77,429 in New York.”24 While the process of determining cost-neutrality can be time-consuming, it provides an estimate of state costs.

States have the option to expand the array of services offered under a 1915c waiver and include such services as home health aides, transportation, medical equipment, environmental modifications, and medically supervised day care. States have a great deal of control in designing a waiver, both in terms of the services and the eligibility requirements. These requirements can vary greatly as exemplified by Illinois and Georgia whose coverage extends to children who are medically fragile or technologically dependent, and to individuals less than 21 years who are ventilator or oxygen dependent, respectively. Due to the mandatory process of involving public input in the development of a waiver application, there is public awareness concerning the waiver’s availability, something often cited as lacking in Connecticut. Overall, 1915c waivers allow considerable state control, design flexibility, and public advocacy.


Table 1: Comparing TEFRA and Home & Community-Based Waivers





TEFRA

Home and Community Based Waiver

Family Income

Not Applicable

Generally not applicable

Disability Limitations

SSI disability regulations

Including both physical or mental



State can establish disabilities covered

State can set the number of slots



Services

Full range of general

Medicaid services



General Medicaid services and additional services as deemed apt by the State

Geography

Entire State

Can be limited to geographic area

Approval Process

Federal Regional Office (prompt)

CMS Central Office (time-consuming)

Examples of several 1915c waivers that aim to expand services to children with special health care needs, particularly underinsured children, are shown in Table 2 in the Appendix. The diversity between the services, financial eligibility, medical need, and number of participants offered through these waivers highlight the ability of 1915c waivers to adapt to the variable populations and the pertinent needs in each State. Some states, like Pennsylvania, use multiple waivers to cover a wide scope of individuals and ensure nearly all of the people with developmental disabilities are covered by public insurance options. Illinois focuses on a very narrow population to whom services are extended; yet that state concentrates on those with the greatest need and highest medical costs regardless of parental income.


Section 1115


States have additional flexibility to modify Medicaid services and eligibility standards under Section 1115 of the Social Security Act. This section allows states to design and implement experimental or demonstration programs while maintaining Federal matching, provided they uphold the objectives of the Medicaid statute. 1115 waivers can “expand eligibility to individuals not otherwise eligible under the Medicaid program, provide services that are not typically covered, or use innovative service delivery systems.”25 The Secretary of Health and Human Services approves only budget-neutral waivers, which can assume two varieties: 1115(a)(1) waives “provisions of section 1902 to operate demonstration programs” and 1115(a)(2) permits “Federal financial participation for costs that otherwise cannot be matched under Section 1903.”

While such demonstration projects under section 1115 have often been utilized by states to incorporate managed care into Medicaid as a response to fiscal pressures, these waivers are less often used to incorporate special provisions for children with special health care needs through program and service carve-outs.26 27 However, the flexibility of 1115 waivers renders them particularly apt for reaching out to underinsured children, as modeled by certain demonstration projects around the country. Examples of such 1115 projects are outlined in Table 3 which shows how Arkansas and Massachusetts provide comprehensive programs specifically targeting children with special health care needs whose families are over-income for traditional Medicaid eligibility. Alternatively, California’s 1115 demonstration focuses solely on the provision of in-home support services, providing crucial support for children with disabilities and their families. The three state projects shown in Table 3 illustrate the range of applicable programs that can be designed to fit the particular needs of a given state and its citizens.

The diversity of approaches permitted under Section 1115 permits states to both tailor programs to fill the specific gaps in their Medicaid programs for underinsured children with special health care needs and to benefit from the experiences of other states. The policy of the National Governors’ Association asserts that the waiver of a given state should become permanent after five years if the state meets the waiver term. Furthermore, any state should be able to adopt another state’s successful waiver program without review.28 The experiences of states such as Arkansas, California, and Massachusetts should therefore be carefully examined. If one state can provide an effective and cost-neutral waiver program that provides more apt service options and expands coverage among the underinsured, then the children with special health care needs of many states could ultimately benefit.


Recommendations for Connecticut

As this analysis of nationwide Medicaid program options indicates, states have chosen a variety of methods to extend health insurance coverage to their underinsured child residents with special health care needs. In light of Connecticut’s existing programs and remaining need, three new adjustments are recommended to best serve the State’s underinsured children with special health care needs in a resource-effective way.




  1. Abandon the 209(b) status and take advantage of the TEFRA option, extending Medicaid eligibility to children with severe medical needs who meet the SSI definitions of disability, regardless of their parents’ financial status. Because the cost of care provided in the home and community must be at or below the cost of the institutional care it replaces, this is a cost-neutral measure for the State, which would allow these children who would otherwise be institutionalized to remain at home. In addition, adopting the TEFRA option would reduce the burden placed on the Department of Children and Families (DCF) by families whose children with special health care needs receive care through its voluntary services program, or in extreme cases are taken into DCF’s custody as a last resort.29 Resigning Connecticut’s 209(b) status to opt into TEFRA in the State plan is a technically swift and smooth step toward filling the health insurance gap experienced among children with special health care needs.
  2. Redefine health status eligibility requirements in the 1915c Katie Beckett waiver to resemble those of Illinois, which limit eligibility to children deemed medically fragile or technology dependent. Currently, the State must budget funds for all slots on the waiver, regardless of whether or not a given child will need medical services. This would save the State’s most comprehensive health care coverage for children with special health care needs most in need of expensive treatment. Connecticut could ultimately institute multiple 1915c waivers of this type to cover all medically fragile or technology dependent children who are underinsured.


  3. Simultaneously design another 1915c waiver to target underinsured children with less complex care needs, who would not be covered by the options outlined in Recommendations (1) and (2) above, and whose families’ incomes exceed Medicaid eligibility. This program should have no income cap, but should require premiums on a sliding scale. This waiver could provide a limited selection of in-home support services and pay for care not covered by the child’s private insurance.

By adopting these recommendations, Connecticut will fill the coverage gap experienced by families with underinsured children with special health care needs, while ensuring that resources are used with the greatest possible effectiveness. A coordinated approach such as this will ensure efficient use of resources and transform Connecticut into a model state for comprehensive health insurance coverage among underinsured children with special health care needs.



Works Cited

Bazelon Center for Mental Health Law. “Avoiding Cruel Choices: A guide for policymakers and family organizations on Medicaid’s role in preventing custody relinquishment.” November 2002. Online. Visited April 23, 2006. http://www.bazelon.org


Center for Medicare and Medicaid. “Research Demonstration Projects- Section 1115.” http://www.cms.hhs.gov/MedicaidStWaivProgDemoPGI/03_Research&DemonstrationProjects- Section1115.asp. Online. Visited April 23, 2006.
Etheredge, Lynn and Judith Moore. “A New Medicaid Program.” Health Affairs. Web Exclusive. 27 Aug 2003. W3-426-W3-439.

Gaskin, Darrell et al. “Health Status and Access to Care for Children with Special Health Care Needs”. The Journal of Mental Health Policy and Economics, 2005.

GeBalle, Shelley and Sharon Langer. “Moving Away from Crisis: Alternatives to Financing Child Welfare Services in Connecticut.” Connecticut Voices for Children. May 2005. p. 10.
Mann, Cindy. “The Flexibility Factor: Finding the Right Balance.”Health Affairs. Vol 22(1). Jan/Feb 2003. p. 62 – 76.
Maternal and Child Health Bureau with the National Center for Health Statistics.of the Center for Disease Control and Prevention. “National Survey of Children with Special Health Care Needs.” 2001.
Oklahoma Health Care Authority. “TEFRA Children Overview.” http://www.okhca.org/client/programs/tefra/faq.asp#1. Online. Visited April 23, 2006.
Schneider, Andy et al. “The Kaiser Commission on Medicaid and the Uninsured.” The Medicaid Resource Book. July 2002.
Specialized Training of Military Parents (STOMP). “Fact Sheet #4: Medicaid.”

http://www.stompproject.org/down/materials/fs4.pdf . October 3, 2003. Visited April 23, 2005.
Written Testimony: “In support of House Bill #6117 – Expansion of the Katie Beckett Waiver. From Glastonbury… Meghan’s Story.”
Vessey, Judith A.. Financing Health Care for Children with Chronic Conditions.” In: P. Jackson Allen and J. Vessey (Eds.), Primary care of the child with a chronic condition (4th ed.) 2004. St. Louis: Mosby. P. 120-136.
Well, Alan. “There’s Something About Medicaid.” Health Affairs. Vol 22(1). Jan/Feb 2003. p. 13-30.

APPENDIX A












 

connecticut

Estimate of Number of Self-Reported Children with Special Health Care Needs: 118,517

PREVALENCE STATISTICS

 

Child-Level Prevalence:

State %

National %

Percent of Children with Special Health Care Needs.

13.9

12.8




 

Prevalence By Age:

State %

National %

Children 0-5 years of age.


9.2

7.8

Children 6-11 years of age.

15.4

14.6

Children 12-17 years of age.

17.1

15.8




 

Prevalence By Sex:

State %

National %

Male

15.9

15.0

Female

11.9

10.5




 

Prevalence By Poverty Level:

State %

National %

0%-99% FPL

12.4


13.6

100%-199% FPL

14.2

13.6

200%-399% FPL

14.6

12.8

400% FPL or greater

14.5

13.6




 

Prevalence By Race/Ethnicity:

State %

National %

Hispanic

11.2

8.6

White (Non-Hispanic)

15.1

14.2

Black (Non-Hispanic)

11.7

13.0

Asian (Non-Hispanic)

— —

4.4


Native American/Alaskan Native (Non-Hispanic)

— —

16.6

Native Hawaiian/Pacific Islander (Non-Hispanic)

— —

9.6




 

— —

Due to the small size of this group in the State population, data have been suppressed to protect respondents' confidentiality.




 

INDICATOR

 

Child Health

State %

National %

Percent of Children with Special Health Care Needs whose conditions affect their activities usually, always, or a great deal.

21.3

23.2

Percent of Children with Special Health Care Needs with 11 or more days of school absences due to illness.

13.8

15.8





 

Health Insurance Coverage

State %

National %

Percent of Children with Special Health Care Needs without insurance at some point in the past year.

8.7

11.6

Percent of Children with Special Health Care Needs currently uninsured.

2.0

5.2

Percent of currently insured Children with Special Health Care Needs with insurance that is not adequate.

33.4

33.5




 

Access to Care

State %

National %

Percent of Children with Special Health Care Needs with any unmet need for specific health care services.

11.7

17.7

Percent of Children with Special Health Care Needs with any unmet need for family support services.


3.3

5.1

Percent of Children with Special Health Care Needs needing specialty care who had difficulty getting a referral.

18.8

21.9

Percent of Children with Special Health Care Needs without a usual source of care (or who rely on the emergency room).

8.5

9.3

Percent of Children with Special Health Care Needs without a personal doctor or nurse.

7.1

11.0




 

Family Centered Care

State %

National %

Percent of Children with Special Health Care Needs without family centered care.

26.7

33.5




 

Impact On Family

State %


National %

Percent of Children with Special Health Care Needs whose families pay $1,000 or more in medical expenses per year.

12.3

11.2

Percent of Children with Special Health Care Needs whose condition caused financial problems for the family.

17.6

20.9

Percent of Children with Special Health Care Needs whose families spend 11 or more hours per week providing or coordinating care.

11.3

13.5

Percent of Children with Special Health Care Needs whose condition affected the employment of family members.

28.3

29.9









APPENDIX B

Comparing 1915 (c) waiver programs




State

California

Georgia

Illinois

Waiver Category:


MR/DD

Children

Children

Waiver Name:

HCBS Waiver for Persons with Developmental Disabilities

Model

Medically Fragile/Technologically Dependent Children

Eligible Population:

Persons with MR/DD who require the level of care provided in an imtermedicate care facility for persons with mental retardation (ICF/MR)

Respiratory or oxygen dependent individuals under 21

Medically fragile individuals, under the age of 21, who would require institutionalization in a skilled pediatric facility or a hospital. This waiver is similar to the Katie Beckett waiver, but unique to Illinois.

Financial Eligibility:










Services:

  • Transportation

  • Adult residential care

  • Day habilitation

  • Respite services

  • Home health

  • Environmental modifications

  • Skilled nursing

  • Specialized medical equipment/supplies

  • In-home Nursing Services

  • Medical Day Care Services

  • Transportation Services (to and from medical day care facility)

  • Private duty shift nursing
  • Home health aide services


  • Nursing training

  • Family training

  • Special medical equipment and supplies

  • Environmental modifications

  • Respite care in the child’s home

  • Respite care center services

  • Medically supervised day care

Participants:

35,372

142

305 (2001)

Maximum Capacity:

70,000 (largest waiver in country)




700 (2005)

Date Approval to Expiration:

8/1/2001 To 6/30/2010

10/1/1992 To 3/29/2008

7/1/1985 Renewed 9/2002 To 8/2007

State Expenditures:

$678,852,401

$5,345,254

$27,573,770

State Expenditure participant*:

$19,192

$37,643

$78,782

Contact:


Department of Developmental Services

916-564-1690



Georgia Advocacy Office’s EPSDT advocacy project

Bruce Roberts

404-885-1234

866-211-0950



Barb Ginder, Chief

Bureau f Interagency Coordination

1320 South Second Street, Second Floor

Springfield, IL 62704



Phone: 217-557-1868

Links:

www.dhs.ca/gov/mcs/mcod/mos/default.htm

www.thegao.org/services.htm

www..hfs.illinois.gov/hcbswaivers/tdmfc.html




State

Pennsylvania

Pennsylvania

Pennsylvania

Waiver Category:

MR/DD

MDR/DD

MDR/DD

Waiver Name:

Consolidated Waiver for Individuals with MR

IBRA Waiver

Infants,Toddlers, & Families (Early Intervention)

Eligible Population:

Children who are 3 and older with mental retardation


Individuals with developmental (onset prior to age 22) physical disabilities who require ICF/ORC level care and for whom the primary diagnosis is not mental health or mental retardation

Children from birth to age three who are in need of early intervention services and would otherwise require ICF/MR

Financial Eligibility:

None listed

Income limit 300% Federal Benefit Rate $8,000 resource limit if over 21

Income limit of 300% FBR

Services:

  • Environmental accessibility adaptations

  • Habilitation services

  • Permanency planning

  • Respite care

  • Specialized thrapy

  • Transportation

  • Visiting nurses

  • Daily living

  • Community integration

  • Environmental modifications

  • Transportation

  • Respite care

  • Vary based upon the indivudal needs of each child and family

  • Speech therapy

  • Physical therapy

  • Parent education/supports

  • Social work

  • Audiology

  • Health service

Participants:

12,946

248

2,745

Maximum Capacity:











Date Approval to Expiration:




1992 Renewal 7/1/2001 To 6/30/2006




State Expenditures:

$705,779,208

$8,547,196

$8,794,013

State Expenditure participant*:

$54,517

$34,465

$3,204

Contact:

717-783-5764

UNITED DISABILITIES SERVICES
1901 Olde Homestead Lane, P.O. Box 10485
Lancaster, Pennsylvania 17605-0485
(717) 397-1841or (800) 995-9581

(800) 757-5042



717-783-5764

Links:




www.dpw.state.pa.us/Health/Access

HealthCare/SuppServWaivers/003670916.htm







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