TESTIMONY for PUBLIC HEARING on the Early Intervention Waiver August 19, 1997 Representative O'Brien and members of the committee. I would like to begin by thanking you for the opportunity to address this committee and hope that what you will gather from today's testimony will help the infants, toddlers, and their families who are already receiving Early Intervention and those who are to follow. My name is Ruth Landsman and I am the parent of a fourteen year old son with severe cerebral palsy, mental retardation and visual impairments who benefitted from early intervention well before it became an entitlement. I am also the director of Parents Exchange, an information, referral and advocacy service for parents of children with chronic illnesses and disabilities. As both a parent and as an advocate I have had the opportunity to experience early intervention as it has moved from an innovative program that was started at the urging of families in this Commonwealth almost thirty years ago to the entitlement we have today. I was involved in the drafting of House Bill 1861 which became Act 212 when in 1990 it was passed unanimously. With the hope of that day in November 1990 and the unanimous support of the legislature I dreamt of a day when I would not hear horror stories from families about their experiences with the early intervention system. My hope was that the law, as it was written and passed, would be implemented with all of the safeguards intended to protect our most vulnerable citizens and their families at one of, if not the most, difficult times in their lives. I wished for a time when my message to families about the early intervention process and their entitlement would not be a surprise to them as I delivered it on the telephone, in a parent meeting, or in a training situation. With corroboration from my colleagues at the Parent Training and Information Centers and the Education Law Center as well as my voluminous experience with families directly, neither my hopes, dreams, nor wishes have been realized. In fact many service coordinators and County administrators feel they have fulfilled their responsibility in this area by handing the family a brochure or packet with this information. I thought we had hit bottom last year with the threatened withdrawal from Part H but the families and providers, and advocates rallied and spoke up and the legislature acted and the Governor heeded our message. "Early Intervention is a good thing and needs to be preserved." With, again, a unanimous vote of the legislature and the Governor's support HR 354 was passed and the Legislative Budget and Finance Committee began their job of investigating the early intervention system and making recommendations which would bring about cost containment. Concurrently, a workgroup of stakeholders including members of the State ICC worked on cost containment plans as well. The reports were issued and the recommendations were made and both groups had supported the submission of a Medicaid Waiver to increase the amount of Federal monies which could be drawn down to cover the expenses involved in providing early intervention services to an ever growing and more complicated group of infants and toddlers. However, when the Department of Welfare unveiled their Early Intervention Waiver, it went well beyond the expectation that reimbursement would be sought for special instruction, at that point the major service for which MA could not be billed under the EI fee scheduled developed from the Allegheny Singer time motion study. It, instead, shifted the focus of all of the services to what was called family centered services. By definition this entailed ‘assistance and support to families' very similar to the family training model proposed last year with the threatened pull-out from Part H. All of the children in early intervention would be eligible for this funding by virtue of qualifying for MA and EI. Other funding sources were and are available for the services not covered by the waiver. On paper, families would be given a choice to participate or not in the waiver. Would their needs be met? Would they be asked to do things they cannot and, in some cases, should not do ‘for the good of their child? Would they know their other options? Would they understand and be supported in using their procedural safeguards if they disagree? The questions could go on and on. With the history we have seen over the long term I am skeptical about the information that would be provided to families to make an informed choice, despite the assurances the State must provide HCFA that this would occur. The same requirement has been in effect for Part H since its inception and I have already shared my experience with this process... I would like to make some general observations about the waiver process as it has unfolded. As I read through the LB&F report they made a number of recommendations which have been ignored or manipulated. One of these clearly is the recommendation to submit a waiver. While the LB&F did support the submission of a waiver it was not necessarily the waiver which has been submitted. The SICC workgroup was much clearer about the waiver to which they were offering support and it was to ADD special instruction to the reimbursable services under MA. Although the state has indicated that they had previously submitted a waiver for this service they, in fact, had asked for a change in their state plan to include this service. Although I do not have the expertise to differentiate between these two actions, I can certainly suggest others who might be able to better explain this difference to you. In looking at the way this waiver has evolved in the past 7 months we cannot help but notice the changing of issues that have attracted negative attention. While the department may categorize these changes as responsiveness I am not as charitable. Some of the changes; the start date changing from 7/1/97 to 1/198, the reduction in the number of children who would be moved into the waiver to 53%, the staggered implementation over the three year period, the refining of the definition of natural environments, the removal of service coordination from the waiver, the commitment to continue to make the EI fee schedule available beyond this fiscal year are all positive changes. Unfortunately, because of the way the Department has handled the issues last year with the threatened pull-out, and this year with the waiver, taking into account the rather dramatic changes which have occurred in the interim affecting early intervention service delivery simply by ‘adjusting' the purse strings, leaves great distrust in the community. In fact, the Department chose to ignore another unanimous vote in the House of Representatives urging that the waiver not be submitted. This was the greatest shock of all. The fact that HCFA sent a 13 page letter listing concerns and questions after reviewing the waiver for only six weeks speaks volumes to me about he concern they had in the original submission. Imagine my shock when Ms. Thaler, at the SICC meeting on August 7th indicated that there were only a few minor misunderstandings on the part of HCFA and that the Department was nearly ready to resubmit their response and an amended waiver application. When I received this packet from HCFA last week, it was nearly the size of a telephone book! Despite the fact that it was submitted on August 8th it was apparently not shared with the SICC members. It was certainly not shared with the audience! While I am impressed with the Department's ability to act quickly when they feel the need to do so, I am wondering why we were told all spring about the six week process to get a submission like this approved by the various offices in DPW when, in fact, this resubmission came only three weeks after the response from HCFA was received. As I read through this volume I saw the changes in language without necessarily heaing a change in intent. There are several key changes to the resubmitted waiver. Instead off calling services family centered, they are now called habilitation, since this is the term HCFA recognizes for waiver services. Service coordination has been removed as a habilitation service from the waiver, the average amount of service under the waiver has been changed from 26.5 hours per year to 36.25 hours per year. Although the rate per unit of service has been reduced, transportation costs of providers of service to the location of service is now billable. I would imagine that these changes reflect the Departments desire to address some of the ‘minor issues' raised by HCFA and the providers. The most important issue in my mind remains the requirement for parent or care giver participation, although the definition of participation is ominously missing from this new document. While I am not, in any way suggesting that parent and caregiver participation is not important and should not be encouraged, top require same could potentially cause pressure to be borne on individuals unable to meet these expectations. As I alluded to earlier I am aware of the requirements for freedom of choice but I am equally and painfully aware of the poor job that has generally been done in providing this information to truly secure informed consent from families. In preparing representation at the only birth to three due process hearing last year I had occasion to seek the definition of informed consent from the federal regulations. It is two fold. The first part requires provision of the information and the second part requires assure that the information is understood. As I mentioned earlier the callers we have heard from, in most cases, did not have a clue about their rights or options other than the very limited choices they were offered. This was true even when we had occasion to review IFSP's and noted signed parent's rights agreements. There are many issues which will be crucial for families to understand. With the removal of service coordination as a service under the waiver the question arises about who will fulfill the responsibilities for the administration of the waiver in lieu of the service coordinator? If it is to be the service coordinator, would waiver related activities be billable to EPSDT service coordination funds or would this portion of their time have to be paid out of County allocations? With service coordinators handling intakes currently, how would the counties handle intakes if not through the existing service coordination system? Further in looking at the breakdown of children by degree of involvement based on Table 2 of Attachment 4 there are only 10.3% of children with a ‘substantial functional limitation in 3 areas or more. This is hardly near the percentage of youngsters for whom the Department seeks waiver funding. While these categories do not relate exactly to one another it does beg the question about how many children who are eligible for early intervention services would truly be eligible for nursing home level care, which is a requirement of the waiver under any circumstances.. On the issue of the relation between the early intervention waiver and the HealthChoices waiver the state's response differentiated between the two based on the need for PCP prescription for HealthChoices services which are medically necessary. EI consists of a range of habilitation services which comport with the definition of early intervention according to the Department. There are two problems with this issue. One, as you may know is the basis for one of the HealthChoices lawsuits which has already been filed charging that the plans have denied services illegally because they are attributed to the responsibility of early intervention or education. The other concern arises from question number 12 in the MA Service Coordination Bulletin which is attachment 2a. It states, "Q. Will Physician orders be hard to obtain?" "A. This is an uncertain issue at this time. Physicians should play a significant role for children at this age because of the American Academy of Pediatrics recommended physician's visit schedule. Efforts of the Department of Public Welfare to expand Primary Care Physicians through Family Networks and Managed Care should prove beneficial. " On page 6 of the MR Bulletin concerning eligibility (which can be found immediately after p. 64 of the waiver) it say, "The County MH/MR program is responsible to ensure that no conflict of interest exists in the eligibility determination process." I would like to suggest to this committee that the County MH/MR program has the greatest conflict of all since they would have to cover non waiver expenses. How will this conflict be handled? My concerns about how the choice will be offered to families revolves around whether families will be offered this funding rather than institutionalizing their child and, on this basis, families would readily agree. What, however, would happen to those rare families who might choose institutionalization because the other care needs of their child or the needs of the rest of their family has driven them to this point. Will ICF/MR placements be made available if that is what they should choose? Please understand, I am not in any way suggesting this as a good option or alternative but the situation is likely to arise. The Department has given assurances that the EI fee schedule will be continued beyond this fiscal year My question then becomes, will it be continued beyond implementation of the waiver as well as encouraging its use as a part of the plan offered to families when and if the full range of choices is explained to them? The Department is quick to explain that families who choose non-waiver services will have them available. It was interesting to see the data submitted with the waiver spanned two fiscal years. I can't help but wonder what differences we might see looking at last year alone... While the state has assured that para-professionals will not be used to deliver waiver services they continue to list them in the provider chart (appendix B-2) . Time and time again the definitions have been massaged or removed to assure compliance with the issues HCFA raised. Is this merely changes in language or a commitment to truly address the issues. I could go on and on but I will not. What I will tell you is that families need choices. They need to be given all of the information to make an informed choice. As I reviewed the most recent packet submitted to HCFA it suddenly struck me, being the skeptic that I am, that DPW had planned this waiver application and had, therefore, included the information about infants and toddlers qualifying for ICF/MR level care through informed clinical opinion in the July 1, 1996 bulletin. It was not a pleasant thought. You have heard from families who did not have the opportunity to choose an inclusive setting for their child years ago. I sit here before you as a parent who chose a center-based setting for my child because it met our family's needs 14 years ago. The program met on a Saturday morning and it gave my husband, my child's father, the opportunity to participate fully. It was 20 miles from our home and we chose to provide therapy for our child outside of this program through our private insurance. We attended this program for three full years and that program is no longer available... Please act to maintain the availability of a range of options for families. It is only through this availability and truly a freedom of choice that early intervention services can be family centered. I thank you for this time and would be happy to answer any questions you might have.