TESTIMONY for PUBLIC HEARING on HEALTHCHOICES August 11, 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 hear in these two days will help the people already in HealthChoices and those who are to follow. My name is Ruth Landsman and I am listed on the agenda for today as a parent. While that is true, 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 experience HealthChoices 'up close and personal'. I will share with you a brief synopsis of the experiences I have had with this system which was supposed to improve the healthcare delivery process for the poor and disabled citizens of the Southeast region of the Commonwealth. I have been part of an advocacy effort which includes many attorneys, advocates, consumers, and agency representative. We, as a group have met with plan representatives and the acting director of the Special Needs Unit for OMAP. I have also attended the children's health coalition and the special needs workgroup convened by the Office of Maternal and Child Health. In addition to training sessions I have conducted and calls from a number of practitioners, my organization has received no less than 200 calls this year specifically about HealthChoices issues. In addition, many of our other callers had other primary issues but then asked questions related to plan selection. In preparing today's testimony I spent a good bit of time reviewing the issues I have heard about and experienced. The issues concerning registration, while important, are being addressed and enough attention has been drawn to them that I would like to focus the time that I have today on the delivery of adequate medical services specifically to children with disabilities our primary target population. The vision behind HealthChoices grew out of a failed effort a couple of years ago to implement a similar plan. During te reworking of the RFP process there was a tremendous amount of input from advocates and consumers of services with a variety of special needs. While every issue was not dealt with in the way we might have hoped, the marked improvements and considerations lead to a process we could if not feel totally comfortable with at least deal with. The text, concerning a variety of issues, directly from the RFP appears in italics in my testimony. At a minimum, there was a good definition of medical necessity: Determinations of medical necessity for covered care and services, whether made on a prior authorization, concurrent, or post-utilization basis, shall be in writing, be compensable under MA, and be based on the following standards. The plan shall base its determination on medical information provided by the individual's family and the primary care practitioner, as well as any other providers, programs, and agencies that have evaluated the individual. Medical necessity determinations must be made by qualified and trained providers. Satisfaction of any one of the following standards will result in authorization of the service: The service or benefit will, or is reasonably expected to, prevent the onset of an illness, condition, or disability. The service or benefit will, or is reasonably expected to, reduce or ameliorate the physical, mental, or developmental effects of an illness, condition, injury, or disability. The service or benefit will assist the individual to achieve or maintain maximum functional capacity in performing daily activities, taking into account both the functional capacity of the individual and those functional capacities that are appropriate for individuals of the same age. Other definition included: Denial of Services Any formal or informal rejection, in whole or in part, of a request for service from either a recipient, PCP, or other health professional. In-Plan Services Services which are the responsibility of the HMO under the HealthChoices Program. Out-of-Plan Services Services which are non-plan, non-capitated and are not the responsibility of the HMO under the HealthChoices Program comprehensive benefit package. These must be coordinated with in-plan service delivery. An acknowledgment of a commitment to serve individuals with special needs: The Department also recognizes its obligations to assure accessible, quality health care for persons with special needs, including persons with special risks, for whom a comprehensive network of quality providers is so important Establishment of special needs units who had the responsibility: The HMO will be required to develop, train, and maintain a "special" dedicated unit within its organizational structure to deal with issues relating to MA members with special needs. The purpose of the unit is to ensure that each member with special needs receives adequate care appropriate to his/her need. Such care includes, but is not limited to, access to specialists trained and skilled in the special needs of the recipient and access to treatments appropriate to the member's condition. These staff members will be responsible to assist recipients in accessing services and benefits of the HMO and to act as liaisons with various government offices, providers, public entities, and county entities which shall include but not be limited to: Office of Children, Youth and Families (OCYF) County Children and Youth Agencies Office of Mental Retardation (OMR) County Mental Retardation Agencies Office of Mental Health (OMH) County Mental Health Agencies School Based Health Centers Juvenile Detention Centers Various Counties' Corporation for Aging Organizations providing services to individuals with HIV/AIDS Public Health Entities Consumer Advocacy Groups WIC Agencies, Public Housing Authorities, Head Start Agencies, and Family Centers As an added stipulation: When children who are in the custody of the county children and youth agency are placed in medical foster care homes, the HMO's Special Needs Unit must work with the medical foster care agency to ensure that necessary medical services are provided that enable the child to be maintained in the foster care home. The HMO must be able to demonstrate that its staff will perform the following functions: Ensure coordination between the HMO and other health, education, and human services systems. Serve on interagency teams, as necessary, with member's or family's consent. Ensure cooperation of the HMO's provider network. Assist in the development of adequate provider networks to serve special needs populations including pediatric specialists. Conduct necessary training for PCPs to assist them in providing services to these diverse populations including the identification of the HMO contact persons. Provide ongoing coordination with PCPs to continually serve special needs population members. HMOs shall work with State Health Department's State and District Office Epidemiologist in partnership with the designated county/municipal health department staffs to ensure that reportable conditions are appropriately reported in accordance with Department regulations, pursuant to Chapter 27, of the Disease Prevention and Control Law. HMOs shall designate a single contact person to facilitate the implementation of this requirement. The circumstances for which a member will be classified as having a special health need will be based on a non-categorical or generic perspective that identifies key measurable attributes of ongoing health conditions. This also includes the recognition of acute, episodic, and chronic illnesses as well as disabilities. A full-time Special Needs Unit Coordinator whose qualifications must include experience with special needs populations similar to those served by Medicaid. The Coordinator will oversee staff to act as liaisons with various government offices, providers, and public entities to deal with issues relating to MA members with special needs, including wraparound services, and to assist individuals with disabilities who are having difficulties accessing services through the HMO. Throughout the process... assignment of PCP: The HMO must have written policies and procedures for assisting members, including parents or attending staff for special needs populations, to select or assigning members to a PCP in cases where the recipient has not selected a PCP through the Benefit Consultant. The process must include at a minimum the following features: If the member has not selected a PCP through the Benefit Consultant, the HMO must make contact with the member within seven (7) business days of his or her enrollment and provide information on options for selecting a PCP, unless the HMO has information that the enrollee should be immediately contacted due to a medical condition requiring immediate care. To the extent practical, the HMO must offer freedom of choice to members in making a selection. If a member does not select a PCP within fourteen (14) business days of enrollment, the HMO must make an automatic assignment, taking into consideration such factors as current provider relationships, need of children to be followed by a pediatrician, special medical needs, language needs (to the extent they are known), area of residence and access to transportation. The HMO then must notify the member by telephone or in writing of his/her PCP's name, location, and office telephone number. The HMO must consider the special medical needs of each member when assigning a PCP to ensure that the member's PCP is trained and experienced in treating the member's special needs. 24 hour hotline staffing: Be staffed by individuals trained in addressing the needs of special populations and be trained and familiar with the availability of the functions of the Special Needs Unit, the services which the HMO is required to make available to children and the availability of social services within the community. Participation in interagency meetings and coordination of care issues: For the ongoing coordination of EPSDT services for children identified with special needs, the HMO must appoint an HMO representative who will ensure coordination with other health, education, and human services systems in the development of a comprehensive individual/family services plan. Availability of specialists: Adequate pediatricians to permit all patients wishing a pediatrician as a PCP to have one for the child(ren) within the travel time limits set forth in Part II.J.2. A choice of at least two (2) specialists for each specialty including pediatric specialists. An adequate number of PCPs specializing in the treatment of persons with HIV and AIDS. The bidder's library included items like: Child Protective Services Law. Telecommunications Standards. MA, Mental Health, and Mental Retardation Regulations applicable to Behavioral Health and Physical Health and Confidentiality Regulations. Landmark Department precedents: Scott v. Snider, Lawrence K., Cordero. QA/UR Standards - Monitoring. Healthy Beginnings Plus: Description and Documentation. HIV/AIDS materials: AIDS Law Project literature; HIV infection books; NYSDOH Regulations on QA in HIV care. Department of Health, Bureau of Maternal and Child Health Materials: Special Kids Network; Childhood Lead Poisoning Information and Case Management Literature; Description of PA's Public Health Network. School Based Health Centers: Literature from Pennsylvania Department of Health, U.S. DHHS, and National Constituent groups on regulations, operation, benefits and financing of school based health centers. Pennsylvania Welfare Code: Sections regarding MA, MH, and MR covered services and facilities (applicable regulations only). HCFA and U.S. DHHS Regulations and Clarifications relevant to Managed Care/Risk Based Contract Issues. And finally, the consideration of cases where there might be third party insurance... Third Party Resource (TPR) A third party resource is any individual, entity, or program that is liable to pay all or part of the medical cost of injury, disease, or disability of a MA applicant or recipient. Examples of third party resources would include: government insurance programs such as Medicare or CHAMPUS (Civilian Health and Medical Program of the Uniformed Services); private health insurance companies, or carriers; liability or casualty insurance; and court ordered medical support. Such resources, or insurance, must be billed prior to billing the MA Program, but a TPR should never interfere with a recipient's receipt of service. The special needs population was considered throughout the RFP. Assurances were given and promises were made. Now I will share with you the realities of the many families I have encountered as well as my personal experiences. In the interest of time, I will merely list them although I have additional information concerning the circumstances as well as some examples of correspondence which has been sent in my son's case which I have included for the committee. Services which did not require prior authorization in the fee for service system were not to be preauthorized under managed care without the approval of DPW... DPW retroactively gave such approval to the plans since there was a ‘miscommunication' in the contracting process and they were already set up to do the prior authorizations. This has affected: therapy services, incontinence products, and in one plan every single referral a PCP is likely to make! An typically developing infant who had been stricken with bacterial meningitis and was about to be transferred to a rehabilitation facility, after 1 month in a primary care hospital, whose family was unaware of the plan having a special needs unit. When I called the plan to try to assist the family who was being pushed to transfer their child to a hospital with a six bed rehab unit (instead of a specialized facility), I was asked by the case manager for the case to tell her about her special needs unit and then asked me why I thought that this child should be involved with the unit. Her perception was that "everything was being taken care of". This family was not even offered a second alternative, also included in the network. Denials which are issued verbally are frequently not followed up in writing which then affects the families ability to appeal such denials. Providers and prescribers are frequently not notified of denials by the plans. Families have received bills for services which should have been covered by the HMO as secondary to private insurance. I am aware of several families who were contacted by collection agencies for overdue balances which should never have been billed to them. Many other families have paid the bills when they have arrived without any mechanism through which they can be reimbursed. Some families have had to wait for services while insurance issues were ‘clarified' and some families have ben denied services completely. All of this is occurring due to the department's inability to develop a policy to assure compliance with the commitment they made (under Scott) to provide MA services to children without cost to the family! Plans have established priority referrals without in any way notifying families of their intent to do so. This has lead to less than appropriate levels of care in settings where the families have no connections or history. Hardly an example of continuity of care which was suggested as a priority. Without such indications in the hospital listings families made less than informed decisions and were limited in the choices they could make. Arbitrary limits to services or equipment or supplies have been set based on ‘what is covered' rather than ‘what is needed'. In many cases the definition of medical necessity has been bastardized, if not boldly ignored, when making decisions about necessity of services or treatments. Children in foster care as well as children in camp have not been able to receive care and services in alternate settings without great difficulty, and frequently, out of pocket expenses being paid. You will hear greater detail about foster children but I can tell you that camp personnel from Variety Club camp had a much more difficult time this year attending to the needs of their young campers with disabilities than they had anytime in the past! From an informal observation I have made, it appears that generally teenagers who have been auto-assigned doctors have been assigned to physicians who handle adolescents and adults. This, despite that fact that families had chosen pediatricians, and in my son's case, had chosen the particular plan because the pediatrician who has cared for him since birth only signed up with one plan. Even though this was the basis for our choice, our choice was not initially honored and a change had to be made. By the way, I never received a card with the incorrect doctor listed on it... When I went to order my sons incontinence product for the first time through his HMO I was told, "they do not cover" an item we had been receiving through fee-for-service for over three years. The denial was made, by telephone to the supplier only. When I called to discuss the issue with the pre-certification office, I was then told flatly, "we do not cover" this item. It was only when I pressed for a written denial which would allow me to appeal that I was asked for a letter of medical necessity. After submitting this letter (which had not been necessary under FFS) I received a verbal approval several days later. Since I had purchased the item, I did not place an order at that time but waited until the renewal date, a month later. At that point I received a written denial as if that were the first request for the item. I have appealed and grieved the denial. The special needs units in each of the plans have very limited staffing. Four to five individuals are expected to cover all of the responsibilities outlined in the RFP. They are not and cannot and, perhaps, were never meant to really address all of those areas... I could go on and on but time does not allow...If you would find it helpful, I would be happy to share additional examples of problems with you or your staff at another time. Families and advocates are having a difficult time following the ‘rules' that seem to be changing on virtually a daily basis! Services have been fragmented for already complicated families due to the contracting of services in different locations (ex. labs, x- ray, therapy). Families are being forced by some plans to actually travel to doctor's offices to pick up referrals for other doctor's visits. When asked to mail them (when time allows) they are told that cannot be done as per the plan. Families already under tremendous pressure and stress are being pushed beyond their limits. Many of the children who have not yet registered for HealthChoices are the most medically complicated. I have spoken to a number of these families and have been told that it doesn't matter which plan they choose because their children will lose a part of their team. The more complicated the child, the more likely this situation is to happen. As you can probably tell, I am a pretty savvy parent. I know the right questions to ask, the right people to ask them of, and the persistence and resources to provide for my child when the system fails. And even though we are enrolled in the plan which, by provider report, is the easiest to deal with, the system has failed us repeatedly in just two and a half months. If I cannot navigate these waters without capsizing the storm warnings MUST be sounded! I am begging for your assistance to put an end to this magnificent experiment gone bizerk! The Department has indicated repeatedly that the reason to move to mandatory managed care was to assure quality care to those who did not have access to it under the fee for service system (and to save money). The fact is that voluntary managed care has been available in this region for a number of years and families have accessed it and received services that they had difficulty getting from fee for service. With this voluntary option those who had difficulty COULD join one of these plans all along. By forcing the move in such a short time span without consideration and resolution of many of the issues we have tried to raise with the department and the plans over a period of nearly a year we are living in a disastrous situation! Despite all of this, the State is planning to move full tilt into the next region and replicate this disaster for yet a broader population. Despite the awareness of all of the issues they have created here they are planning to subject other citizens in the Commonwealth to the same. They must be stopped. They must be forced to fix what has been created here, hold the plans accountable to the commitments made in the RFP concerning quality of care and procedures, and the State must, themselves, be held responsible for their actions and the violations of their contractors. In much the same way as school districts maintain responsibility for their children's education even when they contract with the Intermediate Unit of Approved Private Schools, the STATE STILL OWNS THIS PROBLEM! The special needs population was considered throughout the RFP. Assurances were given and promises were made but many of them have been broken. I would, again like to thank the committee for their efforts and for listening to all of us today and every day. If I can be of any further service, please do not hesitate to call on me.