Transition To A Medicaid Waiver Program For Individuals Who Are Deafblind With Multiple Disabilities

Stephen Schoen: Texas Rehabilitation Commission
David Wiley: Texas Deafblind Outreach

This paper was originally published in "The Individual in a Changing Society", the Workshop Proceedings of the National Conference on Deafblindness.  The Hilton Perkins Program.  1997.

Since the original publication, Stephen Schoen and the Texas Medicaid Waiver for Individuals who are Deafblind with Multiple Disabilities have moved from the Texas Rehabilitation Commission to the Texas Department of Human Services. The services, regulations, and philosophy of the program have remained the same. As of 2002, the program serves approximately 140 individuals.

How can people who are deafblind with multiple disabilities be best supported to live in the community? This presentation describes the evolution of a specific program for people who have disabilities in addition to deafblindness and require significant daily support. Texas is the first state, to develop a Medicaid waiver program specifically for this population.

Pros and Cons of a Specific Medicaid Waiver for Individuals who are Deafblind

There are two opposing philosophical views regarding the best organizational structure to serve people who are deafblind with multiple disabilities:

Non-Disability specific - This view stresses that programs shouldn't offer services based on a person's disability label, but rather, based only on the person's functional needs. According to proponents of this view, a large generic program can offer a menu of all possible services. A good functional assessment coupled with effective case management will result in each client being served efficiently and effectively. In Texas, where we reside, advocates are currently influencing legislation to study the feasibility of combining all long-term care support programs into one based on this view.

Disability specific -This view stresses that deafblindness presents unique needs as a low incidence disability. Ways to assess the needs of people who are deafblind and deliver appropriate services are not generally known by generic service providers. We are admittedly biased in favor of this view. This bias stems from multiple failures of generic services to adequately provide for individuals who are deafblind with multiple disabilities. It also stems from our positive experiences with a deafblind specific program. This program is the Texas Rehabilitation Commission's (TRC) Medicaid Waiver for Individuals who are Deafblind with Multiple Disabilities (DB‑MD waiver) which is now serving 100 individuals in the state. Recent history with the deafblind program in Texas has provided a "natural laboratory." People who had been placed in generic programs for years were able to transfer to the deafblind program when funding was increased and the program expanded from 25 to 100 individuals. People who were reported by staff members to be "unmanageable" are happier with a higher quality of life. People reported as "untrainable" have learned a great deal.

During his school years, Mitch had been in programs that emphasized good communication, including specialized deafblind programs at the Oklahoma School for the Deaf and Texas School for the Blind and Visually impaired (TSBVI). His instruction was provided using sign and tangible communication forms such as pictures until he was no longer able to access them, and afterward tactile symbols and some Braille. Mitch had become a very competent communicator, using sign well in both functional and social contexts. After school, Mitch moved to a generic group home for people with mental retardation. Mitch was the only resident who was deafblind. To assist in transition, the Texas 307.11 Deafblind Project provided in‑service training on appropriately serving Mitch, and found a local sign language teacher to train direct care staff. However, as is common in residential programs, both direct care and supervisory staff left and were replaced rather quickly. Within a year, few of the original staff remained and there was less interest in continued training. For months, there would be long periods in which no one on staff knew how to formally communicate with Mitch. During this part of his life Mitch's self‑care began to suffer, and he began to engage in socially inappropriate behavior which was unusual for him. This was his only way to communicate his dissatisfaction to staff who did not know his language. It worked; eventually he was asked to leave. Today Mitch lives in an apartment with good support through the deafblind waiver. He is connected with the deaf community and is leading a happy productive life.

Frequently, generic service providers "blame the victim" and categorize deafblind clients as "untrainable" and "uncooperative." Until he was 14 years old, Andy lived with his parents and attended a specialized school for people who are deaf‑blind. Andy had learned some sign language and symbol communication. When Andy was 14 years old, he moved to a large "State School for People with Mental Retardation." (Whoever was in charge of naming things, decided many years ago that people with mental retardation should be in "School" for their whole lives.) This arrangement provided "custodial" care for Andy's basic needs, however, his ability to communicate was ignored. At age 30, Andy moved "into the community," with 5 other residents in a suburban home. Unfortunately, Andy couldn't really gain many benefits from this placement, as no one, staff or housemates, in his home had any idea how to communicate with him. As is so often the case without supports for individuals with deafblindness, Andy spent his day "on the couch" self stimulating while his roommates watched T. V., participated in games and performed household chores. After 6 years in this home, the staff decided that Andy wasn't "making any progress" and that his only alternative would be to return to the state school. A particular concern was that Andy screamed at night, thereby keeping his hearing roommates awake. Another reason given for discharging Andy back to the State School was that he was not making any progress on goals set in his annual plan. Prior to discharge from this program, Andy's parents were actually told by the director of the mental retardation center which operated the group home, "if Andy is not moved soon, I'm afraid that staff is likely to kill him." Fortunately, the TRC deafblind program had just been approved as a Medicaid waiver. This allowed expansion of the program, and an immediate opening for Andy. All of the "problems" reported in his previous placement magically disappeared. His screaming was no longer an issue, and as Andy became less frustrated with his environment, occurred less frequently. Andy does "make progress" and is now again able to communicate using symbols.

Danny had been placed in a large nursing home serving younger people with multiple disabilities including mental retardation. He spent 20 hours in bed per day. He spent so much time in bed that he was unable to ambulate without staff assistance, which came infrequently. Staff of this nursing facility maintained that unless Danny kept a sock draped on his head, he would "go ballistic." Danny also had the opportunity to move to a specialized residence funded by the Deafblind program when it expanded. He is using some sign, walking whenever he needs to, and participating in many activities.

In Texas, recent history shows that nonspecific programs lead to poor outcomes for people who are deafblind: being kicked out; being provided poor services; losing their skills; having their calendars put in closets; having no staff who knew any of their language; and sitting on the couch while everyone else watched T. V. All too often, well-intentioned providers do not understand the basics of communicating and working with those who are deafblind. The Texas Deafblind Waiver is designed to provide appropriate services for people who are deatblind with multiple disabilities.

Specific Services in the Deafblind Waiver

In general, Medicaid waiver programs provide a variable amount of services ranging from occasional respite to 24-hour care with as much individualization and client choice as possible. The Deafblind Waiver in Texas includes a great many services in its overall menu of choices for clients. By providing a broad array of services, we are hoping that an individualized plan will result in the client's ideal outcome. Clients can choose between residing with their parents with supports, residing with one or two roommates in an apartment with supports, or residing with up to five housemates in a group home. While other waivers in Texas do not offer a group home option due to potential problems inherent with this model, the deaf blind program does. Some parents, guardians, and clients prefer this option for reasons including safety, stability, and a larger array of staff. The availability of group homes also reduces the danger that people with more expensive needs will be eliminated from the program for exceeding the maximum spending allowances.

Most services in the Deafblind waiver are general, and include: habilitation, physical therapy and other therapies, nursing, and respite. We have also added specific services which particularly benefit people who are deafblind. These include:

Intervenor - This service is defined in the waiver as providing a bridge between the individual and the community. It is provided in a "one to one" ratio. The intervenor must be fluent in the communication method used by the client.

Behavior Communication Specialist- When we initially developed the waiver, we defined this service as "psychologist." Some long time practitioners made it clear that this would be a drastic mistake. The individuals who best know this population do not usually have a Ph.D. in psychology. Rather, they have spent years working one to one with clients, and have a first hand understanding of how "behavior is communication," hence the name. Requirements for this position are that the person must have a Bachelors degree and 10 years of direct experience working with individuals who are deafblind with multiple disabilities.

Orientation and Mobility - A specific service of O&M was added to the menu of services. O&M instructors can be used in either a direct service or consultative model.

Qualifications of all providers - All people who provide direct services to clients: including habilitation workers, case managers, and nurses are mandated by program standards to learn their clients' individual methods of communication including, symbols, behavior, gestures, use of objects, pictures, formal signs, and home signs. One deafblind waiver provider in Texas has over 90% deaf staff. As a natural result, there is a remarkable use of nonverbal communication in this program. Staff associated with the program understand that individualized communication and other adaptations relating to deafblindness are the rule rather than the exception.

Training/ Monitoring (2 Sides of 1 Coin)

In the Deafblind waiver, training and monitoring are the key elements which ensure a high quality of services. TRC regulations for the Deafblind waiver require providers to train staff in important issues relating to deafblindness. Though other support programs require training on special needs of consumers, these programs do not specify training related to sensory impairments. The regulations in generic programs are often interpreted as being fulfilled by offering training in first aid, management of aggressive behavior, and other such general topics. It is likely that providers in more generic programs would not have access to the expertise necessary to train staff in key issues related to deafblindness, even when attempting to consider special needs of their clients. TRC wants all individuals served under the Deafblind Waiver to be supported by staff trained to meet their needs.

In order to help providers meet these training requirements, annual "train the trainer" workshops are sponsored by TRC. These two-day workshops are designed to insure that all providers have administrative and supervisory staff prepared to train direct care workers on a local level. In an effort to assist providers in offering regular training, TRC and the 307.11 Deafblind training project at TSBVI, have recently developed a standard training curriculum. This is designed to make sure the staff providing support services have the skills that survey teams will be looking for on annual monitoring visits.

Regulations require the training to include information on: etiologies of deafblindness; awareness of vision and hearing issues; orientation and mobility; normalization and active participation; communication and choice; and understanding challenging behavior. A training module has been developed on each of these topics. Modules include a training outline, reference materials keyed to the outline, transparency masters, exercises, participant evaluation and "homework" ideas, and suggested additional readings. Copies of pertinent printed and audiovisual materials are supplied with the modules.

Texas Rehabilitation annually surveys deafblind service providers. While we review files, policies, written records, and staff qualifications, we emphasize interviews and observation of services during monitoring. The survey team gets to a client's home early in the morning and keeps dropping in throughout the day and night to see if staff have the skills to effectively provide support. In addition, we interview staff members and guardians focusing on specific clients. After monitoring for two years using fairly generic standards for individuals with developmental disabilities, we have revised the structure of our monitoring instrument to emphasize issues of the most importance to people who are deafblind with multiple disabilities. For example, the question, "Is the individual informed of his choices?" becomes "How do you offer choices to this person who has no formal language?" The primary outcomes we monitor which are relevant to deafblindness are: active participation, communication, choice, normalization, and orientation and mobility. It is not coincidental that our curriculum for providers to train direct care staff covers these same areas.

Active participation: Unfortunately, there is a perception that it's easier to do things for some people who are deaf blind with multiple disabilities than helping them participate in routine daily activities. Though staff often believe tasks such as washing dishes, vacuuming, etc., are easier to "do" than to "teach," there are compelling reasons to help people do for themselves. Keeping people involved in activities of daily living reduces their "behaviors." In a number of surveys of providers we have found staff cooking and cleaning, while the clients sit idly and wait. After dinner is cooked and the dishes are put away, staff is wondering, "What `programming' do we give to clients now that they've eaten?" Involving people in the natural life rhythms that most of us take for granted is highly preferable to doing things for people. On site surveys we observed clients taking a great deal of pleasure from picking out the dinner menu (using symbols to make the choice,) and from preparing and cleaning up the meal. Helping people help themselves answers the question, "What do we do now?"

It is just as important to examine how actively and meaningfully clients fill their leisure time. During one of the author's visit with Mindy, a young woman who was deafblind, her generic service provider explained that during free time in her day program schedule Mindy could "do anything she wanted." During that time Mindy was assisted to sit on a mat in the middle of a large room. Because of deafblindness, Mindy was unable to explore the room from the mat, and because of mobility impairment, she was unable to explore it tactually. There were no attempts to communicate any activity option to Mindy in a fashion she would understand. No materials were within her reach. It seemed that without support, contrary to the staff's idea that Mindy could do "anything she wanted," in this situation Mindy would be unable to engage in any meaningful leisure activity. Is it any wonder that service providers often state that individuals who are deafblind often choose only to sit and engage in self-stimulation when given free time. Training and surveying help ensure that participants in the deafblind waiver have the support needed to make enjoyable and meaningful use of leisure time.

One good measure of a program is how staff view a client who sits patiently all day while engaging in no activity. We have received a number of such individuals who appear to have been trained to be "good sitters." In the, survey team's opinion, when staff are frustrated with the client's inactivity, and are coming up with strategies to engage these clients, a good outcome is achieved. When staff are observed to leave these clients alone because they are "so well behaved", and only work with clients who are very active or "causing trouble" a bad outcome is achieved.

Communication: Communication training materials focus on the varied communication skills and strategies that are vital for effective interaction with people who are deafblind. Program staff are expected to understand the basics of communication forms and functions, as well as the importance of expanding communication within functional contexts. Understanding the use of sign, calendars, tangible symbols, and other strategies for supporting better communication is considered essential for all staff working in the deafblind program.

We observed Kelly during our first survey of a provider. At thirty years of age she came to the Texas Deaf Blind program after living for over 20 years at a State School for people with mental retardation. She had absolutely no sign language skill. She was another person who "just sat." During our next year's visit, Kelly had learned a number of signs and was able to express food and activity preferences and have her needs met. Seeing improvement is a great sign that an outcome is being met. The Texas Deafblind program has no illusions that outcomes are always going to be dramatic. We try to distinguish between providers who make genuine efforts to determine effective and appropriate communication systems and those who use a "cookie cutter" approach. When we see identical communication boxes filled with identical symbols in front of client's identical workstations we know that the provider is not meeting this outcome effectively.

One client, Jackie, who has a reputation for becoming very aggressive and breaking noses when his communication needs are not met, is a good barometer for this outcome. Since Jackie came to our program two years ago, we have not had a broken staff nose. When we see calendars come out before an event occurs, so that staff can inform clients, we know that this outcome is taking place.

During surveys we have observed very effective communication including: routine use of sign, objects, pictures, and tactile symbols; "conversations" with clients who do not use formal language; interpretation of the T. V. news; careful preparation for and support during a visit to the Doctor; and many other impressive examples of a rich communicative environment.

Choice: Communication training emphasizes ways to assist individuals in understanding options and indicating choices. Various kinds of graphic ways to show preference and rejection are covered. Staff should be sensitive to recognizing choices made by individuals who do not use formal language.

At one provider location, staff talked about a client who requested that his staff member be changed. We judged a positive outcome because the staff was changed at the client's request. The more control a client has over his environment, roommates, staff, etc., the more we consider this outcome met. We witnessed clients choosing breakfast menus with pictures, and preparing their own lunches at this same provider. One client brought out a large array of sliced meats, cheeses, bread, and fruits. The other clients prepared their lunches making choices among these ingredients. Even in a group home model, when clients are given turns making decisions for the group, as opposed to the staff or only one client making all the decisions, we consider this outcome met.

Normalization: When our clients are given opportunities to participate in real life as much as possible we consider this outcome met. For example, when providers use public transportation instead of the "big van" we consider this a good use of public resources. When restaurants are chosen based upon client's preferences (instead of the staff's favorite bistro) this outcome is being met. It was not considered met when a large buffet restaurant was used for clients, because, clients were unable to identify the food on the buffet line.

Orientation and Mobility. Health, Safety & Client rights: At one apartment, we noticed that the client's communication board was located high on the wall so that a client who had lower visual field loss could access it. This is an example of being attentive to maximizing access to the environment. We are looking for homes to be accessible and hence expect to see such items as: trailing strips, use of differing flooring materials to indicate different rooms, auditory/visual alarms when helpful, reduction of hazardous architectural items such as ceiling fans, overhanging vents, and dangerous placement of stove burners. We are also observing how excursions outside of the home and apartment are handled. If clients are being pulled, pushed and prodded in a straight line we consider this outcome not met. Staff are expected to know basic sighted guide techniques and have the knowledge to facilitate more independent travel and create safe environments.

Survey team - Having surveyors knowledgeable about support for people who are deafblind is crucial. Monitors in generic programs are unfamiliar with specific needs related to deafblindness are unable to effectively evaluate the quality of services. They also may make inappropriate recommendations due to this unfamiliarity. For example, a surveyor who had evaluated an ICFMR group home required the program to develop a behavior modification plan for eliminating some self stimulatory behavior engaged in by a young woman who was deafblind. When consultants observed the situation, personnel at the home were informed that the behavior was not uncommon for someone with a vision impairment, and could best be resolved through better communication and a more active home life. Staff of this program insisted on a behavior plan rather than new communication and support strategies, however, because the monitor had cited the facility for not having one.

The survey team for the Deafblind waiver always has a qualified "Behavior communication specialist" as a member. This person is a "volunteer" from the Texas Rehabilitation Deafblind Advisory Committee. Fortunately, many members of the Advisory committee have a personal and professional stake in seeing that people who are deafblind are being served well as adults. I have not yet had trouble finding a volunteer. When surveyors have a previous personal knowledge of individual clients' abilities from past experiences, there is a good barometer for the effectiveness of our program. In addition, having a member of the team who is not a Texas Rehabilitation Commission employee also contributes to an "open " framework where suggestions for improvement are almost always welcome by providers.

History of the Texas Deafblind Multiple Disabilities Program

Parents of Deafblind children started to organize after the rubella epidemic of the mid 60's. Leadership was provided through a group which named itself the Deaf-Blind Multihandicapped Association of Texas (DBMAT). As their children were reaching age 20, advocates realized that renewed efforts were necessary because the golden age of "entitlement" was coming to an end. The specific programming they had been able to achieve for their children was nowhere to be found. Again, under the leadership of DBMAT, they gathered forces and lobbied the Legislature to create a small residential (group home) program. This group did all the right things to ensure that their presence was felt. They paid personal visits to Legislators to explain why a special service was needed. They followed up with letters and further conversations. The Legislature agreed with advocates as to the need for a specialized program and the Texas Commission for the Deaf was the first State agency to operate it. The Commission for the Deaf had contracts with two group home providers. By combining funding specific for the deafblind residences (starting at a mere $165,000) with two other sources for a combined funding base of $315,000 they supported 18 people. In 1983, the Texas Legislative Budget Board decided to move the entire program to TRC. The program grew to serve 24 people in three major cities and remained level at that size until 1992. During this interval, other deafblind students "aged out" of school, and were referred to generic services as the only alternative.

Initiation of the Deaf-Blind Medicaid waiver: In 1993, a study of services to people who are deafblind was again performed by the Texas Legislative Budget Board. A recommendation was made to pursue Medicaid funding for the program to increase resources. This proposal was put to the TRC DB Advisory Board which recommended developing a standalone waiver. As part of this decision making process, administrators of the intermediate care facilities (ICF's) and generic waiver services observed our clients and agreed that a specific program would better meet their needs.

Simultaneously a revolution in Texas government created a single state agency for Medicaid so that TRC could be an "operating agency." After much bureaucratic effort, the Texas Waiver started March 1 1995. The program has now grown to serve 100 individuals. Increasing the budget of the program through Medicaid brought us new challenges: finding clients who were ready to begin services; and finding qualified providers of services.

Identifying clients:Because there was limited availability of deafblind specialized services prior to the creation of the waiver, most individuals with deafblindness and multiple disabilities had found services in other more generic programs over the years. There was a waiting list for deafblind services, but it was for the most part inaccurate, because the availability of services through the deafblind program was sporadic and involved a long wait. When the program was expanded and services became immediately available, there was a hurdle to cross in simply finding those individuals who would benefit from services.

TRC joined together with staff from the Texas Commission from the Blind (TCB) and Texas School for the Blind and Visually Impaired (TSBVI) in trying to develop a comprehensive referral list. After working out issues of confidentiality, a list began to develop. These three agencies did targeted mailings to inform potential consumers of the availability of the new waiver services. Additionally, presentations at conferences sponsored by TSBVI as well as articles and announcements in the 307.11 project newsletter helped spread the word. As a referral list developed, TRC made phone contact with as many families as possible to do a needs assessment.

One problem with enrolling new persons into the program is a result of these individuals having found other generic services when deafblind services were difficult to obtain. In many cases these people did not want to disrupt the situation by changing programs, even if they were not entirely satisfied with the services they were receiving. Over the years, however, many of these same individuals have entered the deafblind program after the generic service providers withdrew services feeling unable to meet the person's special needs. Sometimes, parents whose children were discharged from generic community homes back to state institutions were afraid to take further "risks" of considering community based support options.

Kris received services from two or three generic community-based group homes, but was asked to leave all of them because of her behavior. Kris's behavior becomes more challenging when good communication support is not available. After these unsuccessful attempts to access community-based services, Kris moved to a state institution, and continues to reside there. Now, her mother will not consider the Deafblind Waiver because these negative experiences lead her to believe that her daughter can't be served well in community-based settings.

Similarly, Randy resides in a state institution. When Randy was approaching adulthood, one of the authors took his parents on a tour of locations offering support services. After seeing community-based options, they strongly rejected larger institutional settings. However, Randy was asked to leave shortly after moving into a small group home. His parents then resigned themselves to an institution feeling he would have a greater chance of stability there. These situations emphasize the need to have a deafblind specific program in place when people need it.

TSBVI, as a subcontractor of the state 307.11 deafblind project, has access to the data base from Federal deafblind school-age census. Families of students identified on the census find out about the program through an annual mailing of resource information. This allows interested persons to get on the referral list at an early age, to assist in planning. Knowing the service exists early allows student to plan to access the program, instead of falling back on generic services and transferring later when individual needs are not being met. Collaboration with agencies such as Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) (TCB), Texas Mental Health and Mental Retardation (TXMHMR), and Texas School for the Deaf (TSD) also keeps the referral list current. The state parent organization (DBMAT) provides information to parents throughout the State and frequently refers parents who have never heard of the Medicaid waiver, but whose children are eligible and in need of services.

Effective transitioning: When individuals are referred to the program, information from past service providers can make for successful transition to Waiver services. Information, including a videotape profile of preferred activities and successful support strategies, is available from TSBVI for past students at that campus. TSBVI Deafblind Outreach encourages school districts to create similar transition information for students being served throughout the state. Other transition information is available from past service providers such as TCB's Criss Cole Rehabilitation Center. Such interagency collaboration can make a significant difference in helping waiver providers prepare to provide effective services.

For example, some individuals may have been excellent communicators, but after years of being in a non-signing or otherwise uncommunicative environment, become withdrawn. For instance, Chris was perceived to be somewhat non-communicative by his service provider until viewing tapes of Chris during his school years, using functional sign, understanding a weekly picture calendar, and indicating choices. Marcie was not interested in participating in activities around her home or communicating with others after years without specialized supports. Her waiver program case manager reacted to a tape showing this new client actively participating in a variety of activities by stating it was a goal to "help her get her life back."

In addition to records, staff from TSBVI and TCB make themselves available to share their past experiences with individuals entering the program. This continuity is especially important since the individuals served through this program are generally unable to effectively advocate about services for themselves.

Pete had for many years attended a specialized school program for individuals who are deafblind. In this program, he learned to use some functional sign language and hundreds of tactile symbols which describe people, places, and events. Pete generally has anxiety about daily events, and relies on clear communication about the activities in his life to remain calm. When he knows what to expect and can seek assistance to have has needs met, Pete interacts appropriately with others. When he is anxious or frustrated, he can become aggressive to himself, to others, and to property. To avoid these behaviors Pete needs a fair deal: to be able to ask someone for a drink or an activity and to know basic information about his daily schedule.

At age nineteen, Pete had moved into a group home for people with mental retardation and was attending his local school. Specialized communication strategies were not being used in the group home. As he neared graduation, things had become so bad at home that the school district contacted the Mental Health/Mental Retardation state office with serious concerns. As a result of this, Pete was referred to TRC's deaf-blind waiver program.

When he entered the TRC Deafblind Program, Pete had developed a routine of continuously screaming and tearing his shirts. Over ten shirts per day were being "recycled" in this manner. Staff received no referral information from the previous group home. Pete continued to use a few nonstandard signs which were not discernible to the staff of the program (who happened to be deaf.) During a survey visit, we were questioned by staff about what Pete's signing could mean. Because we were aware that Pete had spent years at the Texas School for the Blind, we called staff there, described the most prominent sign, and were immediately told that Pete wanted "toys," objects he manipulated to relax. We immediately provided some of his favorite toys. This began a gradual adjustment for Pete. After two years in the program, he almost always has a smile on his face, doesn't tear any shirts, and is very interested in discussing his daily activities through the use of calendar and sign.

What is a Medicaid Waiver?

"Medicaid waiver" is another phrase that bureaucrats shouldn't assume the listener understands. Realizing that, we will attempt to give you a very short course in what a Medicaid waiver is.

Initially, when the Federal government decided to spend Medicaid money on long term care, it was assumed that this would be delivered in a nursing home. To be eligible for long-term care, individuals need to require 24-hour care for basic functions of living. As with many federal programs, the scope of Medicaid long-term care has gradually expanded. The target for long-term care expanded from only elderly people requiring nursing homes to include other people with functional disabilities. Likewise, the type of institutions which could use Medicaid funding increased to include state residences for people with mental retardation. When people became aware that some individuals were unnecessarily living in institutions (especially children), because that was the only way to get long-term care, other avenues opened up. The first was the intermediate care facility (ICFMR), a small home in the community. Basically, all the rules and structures of the nursing home were applied to the group home. But, the question of how to serve people who wanted to stay with their own family in their own home remained. Hence, the institutional requirements for 24-hour care were "waived." In other words, group home and nursing home rules were modified so services were delivered in the community. But, while almost all agree that people are better off in their own homes than in nursing homes, the federal government has made a stipulation that Medicaid waiver programs must be "cost-effective" compared to the institution. Every year, waiver operators, such as TRC, must compare our expenses with those of institutions to prove we are cheaper. This is usually the case, because services are actually less expensive in the community.

Ingredients for Starting a Waiver

In order to create new flexible regulations and provide services using Medicaid funds, States must submit a waiver request to the Health Care Financing Administration. Below are some necessary steps in creating a specific waiver such as the Texas Deaf-Blind Multiple Disability waiver.

Start up state appropriations: Medicaid is funded as a Federal/State matching program. Without some base of state funding, federal funds simply can't be drawn down to match the States contribution. In Texas, a very small base of funding to support 16 people with deafblindness (along with funding from another agency) was leveraged with Federal dollars to eventually provide adequate funding for 100 clients. A good program which meets the needs of people will prove its worth, and funding will follow. Satisfied consumers and families will ensure continued funding through advocacy if the program does a good job of meeting their needs.

Define your population to have an institution to "waive off of": Because Medicaid waivers are based on providing an alternative to an institution, you must choose an existing institution to "waive off of." In Texas, we were able to delineate a subset of people living in intermediate care facilities who shared similar characteristics to our clients, and resided in an institution for people with "related conditions." Hint: The more expensive the comparison population (i.e. the more needs they really have in common with people who are deafblind with multiple disabilities) the easier it is to prove cost effectiveness each year. In most states, there is only one waiver for people with developmental disabilities. In some states, there are many more. Texas has four waivers for people with developmental disabilities.

Preprint waiver application: Believe it or not, HCFA encourages waivers. Why not? They are cost effective, and provide for the best quality of life. So HCFA has made it relatively simple (considering they are a large federal bureaucracy) to apply for one. The Regional HCFA office can provide a "preprint waiver application". A program serving less than 200 people is considered a "model waiver" and the application is significantly easier to complete.

Cooperative State Medicaid Agency: States have great latitude as to their structure for a Medicaid office. When starting a specific waiver, it helps to have a "single state agency" which provides central administration of Medicaid programs. Hopefully, other state agencies can become "operating agencies" under this large umbrella. Texas is fortunate to have a very progressive single state agency which fosters creative use of Medicaid funding.

Provider procurement: When the Texas program for people who are deafblind expanded, we realized that providers should be recruited to serve people in as wide an area of the State as possible. We wanted those families which wanted to stay together to be afforded supports wherever they lived. Apartments needed to be available as close to client's families as desirable. Providers needed to have a strong interest in learning the needs of individuals who are deafblind. We published a request for offers statewide. Providers were interviewed and their answers judged based on knowledge of deafblindness, knowledge of community based programming, and previous experience providing support to people with developmental disabilities. Because Texas is an incredibly large state, we have not been able to serve every county. However, in many of these counties, no one has been identified as needing services. We are now in every major Metropolitan area, and many minor ones as well as rural areas. As new providers with no previous experience in deafblineness were added, we have felt a strong need to enhance both our training and monitoring functions.

Reimbursement methodology: Providers are paid based upon their expenses in providing services. Each year they complete an arduous series of accounting forms to document their expenses. These reports are averaged and a rate for service is developed which is hopefully fair to all.

Long term Prospects for the Program

We feel that the good work we are doing will ensure long-term survival of the Texas Deafblind program. However, we are working with a number of variables which can effect this prospect:

"Mix master" approach to long term care problem - It is possible that the wave of sentiment toward creating a single long term care agency and single Medicaid waiver may sweep the Deafblind Program in its undertow. It is also possible that the effervescent advocacy of parents, and professionals will keep the program afloat. As a compromise, a third likelihood would be for a means of keeping the values, training, standards, and services alive within the structure of a single long term care agency.

Block grant possibility - The much anticipated "Federal Block Grant" approach to Medicaid is likely to have little initial impact on the Deafblind Program. In the long run a block grant could have positive features of giving states more control over Medicaid programs so that local needs are better met. It could have negative impact of increasing turf battles among programs fighting for a finite amount of Federal funds.

Managed care - Texas is already piloting providing managed care as a part of a menu of managed care. There are many potential pitfalls to serving our population under a total managed care model. Few private providers will want a deafblind person in their Health Maintenance Organization. Not only do the individuals need 24 hour care, they have a great deal of physical complications including diabetes, respiratory ailments, heart ailments, and expensive dental needs.

Conclusion

In Texas, we have found that a disability-specific Medicaid waiver for people with deafblindness is essential for providing a high quality of services. Building a system which provides appropriate services, trains and monitors workers appropriately, and values expertise in all areas of deafblind service delivery is well worth the effort.