FAMILY & COMMUNITY SUPPORT

Centers for Medicare and Medicaid Services
Department of Health and Human Services
Attention: CMS-2261-P
P.O. Box 21244-8018
Baltimore, MD 21244-8018

October 12, 2007

The Child Welfare League of America (CWLA), representing hundreds of public and private child- and family-serving member agencies across the country, respectfully submits these comments on the Proposed Rule for the Medicaid Program’s Coverage of Rehabilitative Services (CMS-2261-P) that was published in the Federal Register on August 13, 2007 (72 Fed. Reg. 45201).

CWLA recognizes and appreciates that this proposed rule attempts to move towards a more transparent system that will promote administrative and managerial integrity, while also making rehabilitative services more person-centered and focused on positive, effective outcomes. In attempting to do so, however, significant ambiguity remains and CWLA is highly concerned that various provisions of the proposed regulation-albeit well-intentioned-will greatly restrict access to vital community-based services for many vulnerable populations, including children involved with the child welfare system and in our nation’s foster care system.

In addition, CWLA is troubled by the Regulatory Impact Analysis’s certification that CMS-2261-P “would not have a direct impact on providers of rehabilitative services that furnish services pursuant to section 1905(a)(13) of the Act.” As the proposed regulation significantly changes the scope of rehabilitative services that have been made available to children and other individuals with mental and physical disabilities for quite some time and imposes new administrative requirements, it is hard to imagine that providers would not be impacted.

Similarly, while it is sometimes necessary to change the contours of a service or program, the evolution here seems to be one-sided, reducing Federal Medicaid spending on rehabilitative services by $2.2 billion between FY 2008 and FY 2012 and although acknowledging that States will be affected, merely stating that “we do not know nor can we predict the manner in which states would adjust or respond to the provisions of this rule.” As a federal-state partnership, Medicaid has a responsibility to provide health care for those deemed eligible, including children in foster care, and we fear the result if such a substantial amount of Federal funding is withdrawn.

At a point in time in FFY 2004, there were 509,662 children in out-of-home care and during that same year, approximately 800,000 children spent at least some time in a foster care setting. Many children that enter the foster care system are at an extremely high risk for both physical and mental health issues as a result of biological factors and/or the maltreatment they were exposed to at home. Some children are in out-of-home care for other reasons, such as their parent(s) voluntarily placing them or feeling compelled to do so. For example, the Government Accounting Office estimates that in 2001, due to limits on public and private health insurance, inadequate supply of services, and difficulty meeting eligibility requirements, parents placed over 12,700 children into the child welfare or juvenile justice systems solely so that these children would be more likely to receive necessary mental health services.

Regardless of why the child has come into the child welfare or foster care systems, removing the child from his/her home, breaking familial ties and the continued instability that often ensues greatly exacerbate any original vulnerability. Numerous studies have documented that children in foster care have medical, developmental and mental health needs that far surpass those of other children, even those living in poverty.

When children are removed from their home base and placed in state custody due to no fault of their own, Medicaid steps in to provide many of these children with health care that helps them get on the road to recovery. Medicaid Rehabilitative Services are especially vital, as they offer a realistic opportunity to-in the least restrictive setting possible-reduce the physical and/or mental disabilities that many children in foster care have, thereby restoring the child’s functioning level, decreasing lingering and long-term negative impacts, and ultimately reducing costs. Rehabilitative services are also community-based and consumer- and family-driven services, in line with both the President’s New Freedom Commission on Mental Health and the U.S. Surgeon General’s recommendations. As the status quo stands, despite concerted efforts, when evaluating the Federal Child and Family Services Reviews (CFSRs), the U.S. Department of Health and Human Services in 2005 found that only one state achieved substantial conformity in ensuring that children involved with the child welfare system’s physical and mental health needs were met.

Many children involved with the child welfare and foster care systems are already slipping through the cracks and it is essential to bridge rather than widen the gaps. CWLA sincerely appreciates our opportunity to comment on this proposed regulation. We look forward to working with you to ensure that the best policies are put in place for our nation’s children.

PROVISIONS OF PROPOSED RULE:

Section 440.130: Diagnostic, screening, preventative, and rehabilitative services

440.130(d)(1)(iii), Qualified providers of rehabilitative services: We appreciate that CMS holds with us the joint desire for providers of rehabilitative services to be aptly prepared, but we urge that States be granted the latitude necessary to ensure that services would not be restricted as a result. For instance, States’ recognition of and threshold for therapeutic foster parents as qualified providers should remain untouched.

440.130(d)(1)(v), Rehabilitation plan: The requirement for a written rehabilitation plan will help ensure accountability, but we suggest that children’s developmental stages and the often difficult-to-predict phases of restoration be taken into account. With children consistently progressing through developmental stages, even upon the most informed initial assessment of needs, it is complicated to pinpoint anticipated progress. Similarly, children-as all individuals suffering from physical or mental impairment-can quickly deteriorate, necessitating an adjustment to the rehabilitation plan’s enumerated goals. Providers therefore should be granted ample flexibility to adjust children’s rehabilitation plans in the form of crisis planning so that prior steps forward are not negated.

In regards to the plan needing to be developed with input from “the individual, individual’s family, the individual’s authorized decision maker and/or of the individual’s choosing,” we applaud the person- and family-centered approach taken. However, we remind CMS that children involved with the child welfare and foster care systems-though the beneficiary of services-are not always competent to be heavily involved in the process, or in the case of strained familial relations, to be the ones determining who is involved. Similarly, much of this population has limited contact with certain members of their family, so we urge language be added to ensure that “family” is broadly interpreted to include guardians and/or caregivers responsible for the child’s wellbeing (including, but not limited to, foster parents, kinship caregivers, custodial public agency staff, and group or residential care staff).

440.130(d)(1)(vi), Restorative services: Restorative services and thus covered rehabilitative services, under the proposed definition, are contingent upon the individual having experienced a functional loss and having had the ability to perform the function in the past (and not necessarily having actually performed it). This definition affords fair latitude in the adult context, but does not properly consider children and their special circumstances. A child may not have experienced a “functional loss” per se and/or have had the ability to perform the function in the past because simply, it was not age appropriate for him/her to have had the ability. In addition, children who are exposed to trauma, such as the abuse or neglect that lands many children in our nation’s child welfare and foster care systems, may never had had an opportunity to develop “normally” because factors beyond their control compromised that potential. In those situations, it is the very point of rehabilitative services to fill deficiencies and seek to bring the child to an age- or developmentally-appropriate level. This definition should be more child-aware such that even if a child did not have the ability to perform the function in the past, restorative services and thus rehabilitative services include services to enable a child to achieve age-appropriate growth and development.

CWLA agrees that rehabilitative services’ goal is not just to maintain functioning, but to move the individual toward recovery. It is difficult, however, to continue the individual-in our case a vulnerable child or youth-on the path towards meaningful recovery if at the moment s/he reaches the originally stated goal, services and accompanying funds are withdrawn. Were that to happen, the child’s progress would be nullified, his/her health would likely rapidly deteriorate-only requiring more intensive and more costly intervention at a later date that could possibly force the child into a more institutional setting. Maintaining functioning should be a permissible goal under the rehabilitation plan if the child/youth’s health and progress would otherwise deteriorate.

440.130(d)(2), Scope of services: This provision maintains the definition of rehabilitative services as “medical or remedial services,” but to more accurately reflect the entire proposed regulation that encompasses certain “restorative services” as covered rehabilitative services (440.130(d)(1)(vi)), the phrase “restorative services” should be added.

440.130(d)(3), Written rehabilitation plan: CWLA supports the written rehabilitation plan’s goals of transparency and ensuring that “services are designed and coordinated to lead the goals set forth in the statute and regulation” and the general avenues taken to achieve those goals. We submit only the following clarification questions and recommendations.

The written rehabilitation plan should be able to be integrated with any concurrent health plans that the child has, as well as with any child welfare service plan for the child and family. This will lessen the administrative burden and by crossing system lines, work towards a more integrated, effective structure for the child.

CWLA appreciates the desire to have surrounding parties involved in the development, review, and modification of the plan goals and services, but hopes to have language added that acknowledges the very different situation held by children involved with the child welfare and foster care systems. These children, especially those who have had parental rights terminated and are in the custody of the state, may not have familial support or input to turn to. We therefore recommend adding to 430.130(d)(3)(ii) and (iii) (or alternatively, to a new subsection) the following language: “For a recipient involved with the child welfare or foster care systems, input or guidance in the development, review, and modification of plan goals and services may be obtained from the child’s parents when appropriate, guardians, and/or caregivers responsible for the child’s wellbeing (including, but not limited to, foster parents, kinship caregivers, custodial public agency staff, and group or residential care staff).”

Along similar lines, while CMS is properly hoping for a person-centered process by requiring the involvement of the individual in the development, review, and modification of the plan, a child may not always be competent to participate. Language or a new subsection should be inserted stating that “A child under 18 should be actively involved in the development, review, and modification of the plan if deemed developmentally ready and appropriate.”

If the child is deemed competent to participate in the process, any materials provided to the child to inform him/her should be age- and developmentally appropriate and the plan should be thoroughly explained to the child. The plan, on a more general note, should be culturally appropriate and plainly understandable by those who are involved.

In regards to 440.130(d)(3)(xi), which requires the written plan indicate the extent to which services may be available from alternate providers, a standardized list of alternate providers should be acceptable (to lessen administrative burden of repeating this process).

Section 440.130(d)(3)(xii) requires the written plan to include the individual’s “relevant history, current medical findings, contraindications, and identify the individual’s care coordination needs.” This is important, but is not always possible. Because the children who CWLA and its members serve are often moved frequently through the system and between placements and because of other uncontrollable factors such as lapses in health care, relevant history and current medical findings may not be accessible. The child may not have even had a primary care doctor. This subsection should emphasize that the written plan should reference these documents when possible.

Section 441.45: Rehabilitative services

441.45(b), Newly Deemed Non-Covered Services, Intrinsic Element Standard:CWLA wholeheartedly desires for providers to properly and accurately bill various, distinct programs, including Medicaid, and appreciates CMS’s attempts to draw more recognizable lines. However, we feel that 441.45(b), which would put in place an “intrinsic element” standard, is a disproportionately large reaction to the situation and any existing concerns. Gradual changes are occasionally needed to better programs and services, but we do not view 441.45(b) as an improvement and instead see it as an enormous step backwards with a devastating real world impact.

Rather than making such sweeping changes through rulemaking, CWLA believes that these important decisions that impact vital community-based services should be debated thoroughly and done through the legislative process. Some of this debate occurred when Congress deliberated over the Deficit Reduction Act of 2005 (DRA, P.L 109-171). During that process, Congress specifically rejected adopting the “intrinsic elements” test for Medicaid rehabilitative services that CMS-2261-P would put in place. This indicates that Congress foresaw the dangers of such language and instead, desires for Medicaid rehabilitative services to remain a strong and viable stream of care. The language proposed in 440.145(b) seems to do the exact opposite, as it will ultimately burden already struggling systems and restrict access to services for some of the most vulnerable segments of the Medicaid beneficiary population, including children in foster care. We also believe it will intensify disparities in service provision between localities-and therefore among children. If federal dollars are removed, wealthier communities may be able to sustain the availability of rehabilitative services, while children living poorer and/or rural areas with be left unattended to.

Denying services to eligible and needy individuals hugely conflicts with the entire backbone of the Medicaid program and in particular, with Medicaid’s Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) program. Under EPSDT, children eligible for and enrolled in Medicaid must receive regular check-ups, including vision, dental, and hearing exams, as well as necessary immunizations and laboratory tests and all medically necessary follow-up testing and treatment. By excluding federal dollars from certain rehabilitative services furnished through non medical programs, access to medically necessary services will be restricted, leaving the promise of EPSDT unfulfilled. This is especially egregious considering the extreme nature of the health needs of children involved with the child welfare and foster care systems and the fact that the Department of Health and Human Services in analyzing the Federal Child and Family Services Reviews (CFSRs), found that only one state achieved substantial conformity in ensuring that children involved with the child welfare system’s physical and mental health needs were met. In other words, the situation for these children-many of whom have experienced life-altering trauma and have little or no familial support-is already dire and should Medicaid step out of the picture, will only worsen.

We are further concerned that 440.45(b) provides no guidance on how to determine whether a service is an “intrinsic element” of a program other than Medicaid and rather, seems to charge ahead, listing certain public programs such as child welfare and foster care as likely targets. The child welfare system’s role is to respond to reports of abuse and neglect, help at risk families, and help secure permanent, safe, and secure homes for children. Part of this equation is to assist children who have suffered trauma in the recovery process and to help locate adequate services when the child has been removed from his/her family. Child welfare, however, is not qualified to provide certain services and because the system instead merely acts as a go-between, Medicaid rehabilitative services are not “intrinsic to” child welfare.

Similarly, Medicaid rehabilitative services are not “intrinsic to” foster care. Title IV-E, Section 475(4) of the Social Security Act and the Code of Federal Regulations, Title 45, Chapter XIII, Part 1355.20 states that foster care maintenance payments are “to cover the cost of (and the cost of providing) food, clothing, shelter, daily supervision, school supplies, a child’s personal incidentals, liability insurance with respect to a child, and reasonable travel for a child’s visitation with family, or other caretakers.” Clarifying further that rehabilitative services are not intrinsic to foster care, the Code of Federal Regulations prohibits States from claiming Title IV-E federal financial participation (FFP) for “costs of social services provided to the child, the child’s family or foster family which provide counseling or treatment to ameliorate or remedy personal problems, behaviors or home conditions” (45 CFR, Chapter XIII, Part 1356.60(c)(3)) (emphasis added). States have more discretion under Title IV-B, but because its primary purpose is not to provide medical assistance, rehabilitative services are not “intrinsic to” it either. Moreover, IV-B is a capped program that does not envision providing and is not able to provide all necessary services.

CWLA envisions and has long advocated for (as detailed in CWLA’s Standards of Excellence for Health Care Services for Children in Out-of-Home Care) the child welfare system and Medicaid to work collaboratively towards the wellbeing and healthy development of each child in its care. It is essential that the systems work together, rather than one stepping completely out of the picture, as 441.45 would permit Medicaid to do in certain, vital circumstances. The section also completely defeats the Substance Abuse and Mental Health Services Administration’s (SAMHSA) diligent work to promote a system of care that provides a coordinated network of community-based services and supports that are organized to meet the challenges of children and youth with serious mental health needs and their families. As such, CWLA strongly urges 441.45(b) to be wholly dropped.

441.45(b)(1)(i) and (ii), Therapeutic Foster Care and Packaged Services Furnished by Foster Care and Child Care Institutions: CWLA wishes to specifically address the exclusion of therapeutic foster care services except for “medically necessary rehabilitative services for an eligible child that are clearly distinct from packaged therapeutic foster care services and that are provided by qualified Medicaid providers” (441.45(b)(1)(i)) and similar packaged services furnished by foster care or child care institutions (445.45(b)(1)(ii)) from the definition of Medicaid rehabilitative services. As the Surgeon General indicated in his 1999 report on mental health, with care provided in private homes with specially trained foster parents, therapeutic foster care is considered “the least restrictive form of out-of-home therapeutic placement for children with severe emotional disorders.” It provides evidence-based care for children who otherwise would be placed in more institutional and costly settings-settings which can also reap emotional tolls on children and their families. The Surgeon General recommended therapeutic foster care as a community-based avenue forward for children’s health and it also seems very much in line with the report issued by the President’s New Freedom Commission on Mental Health.

Unfortunately, the proposed language, while not explicitly prohibiting therapeutic foster care, whittles away at its core so much that access will surely be restricted, if not completely shut off. As a result, because there is a continuum of care in foster care, children who cannot be maintained in regular foster care due to serious emotional or other health issues will be forced into more restrictive settings-a result that cannot be justified by any amount of federal savings. Also, while federal dollars may be saved up front, by not helping these children and youth early on, the long-term cost to both the children and society will be far greater. Again, CWLA urges that 441.45(b)(1)(i) and (ii) be dropped.

Only therapeutic foster care services that are “clearly distinct from packaged therapeutic foster care services” could be billed as rehabilitative services, but it is unclear what is meant by “clearly distinct.” CWLA strongly advocates that states be afforded the discretion to define therapeutic foster care as a single service and pay through a case, daily, or appropriate mechanism. Packaged services allow the necessary amount of time and attention to be spent on children suffering from intense mental issues. The alternative imposes the significant administrative burden of relegating activities into somewhat arbitrary time blocks, which ultimately takes time away from the child and reduces services’ effectiveness and the child’s progress.

441.45(b)(5), Institution of Mental Disease: Summarily excluding services provided to residents of an institution for mental disease (IMD) who are under the age of 65, including residents of community residential treatment facilities more than 16 beds would likely drive costs up and force children into more restrictive environments. This goes against the best interests of the child and again, conflicts with the President’s New Freedom Commission on Mental Health’s reports urging more community-based care. This subsection should be stricken. Alternatively, before changes go into effect, an appropriate and reasonable transition period must be provided for impacted parties.

CONCLUSION

On behalf of CWLA, its members, and the children and families we serve, we thank you for the opportunity to comment on this proposed rule. We hope that as we move forward with this process, we will work together to keep children’s best interest at the forefront. Only then can we ensure that children and their physical and mental health needs are made a national priority.

Sincerely,

Christine James-Brown
President/CEO
Child Welfare League of America