"One of the biggest challenges I face is to get staff to think outside the box. Staff should be taking Tony into the community and teaching him how to navigate in this world. He'll never be able to work if he can't do this, and there needs to be consistent services if it is to be beneficial." - Pat Munoz

 

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May Family: Kathy & Sara

Kathy and Sara May

Sara May has a rare condition called Cockayne syndrome. At the time she was diagnosed, only 50 other children in the United States had this condition. Cockayne syndrome is an inherited disorder which typically includes growth retardation, abnormal sensitivity to light, a prematurely-aged appearance and developmental delays. Now, at 23 years old, Sara is going through menopause.

Kathy fears that her daughter will pass away before her number ever comes up on the waiting list. When Sara was diagnosed with this syndrome at age 5, Kathy was told by a geneticist that Sara had 10 years to live. Sara has lived 13 years beyond the normal life expectancy of a person with this syndrome. But, it has come with great cost. She lost her hearing, and she is losing her vision and her ability to walk.

While seeking help for her daughter, Kathy attended a "boot camp" for families sponsored by state agencies, advocates, MRA representatives and providers. The purpose of the boot camp was to educate families who were seeking services about the long term care service system. She was told if she would "lock up" Sara in a nursing home or a State School, she would immediately be number one on the waiver. This is not the route they wanted to go. Sara's choice and desire is to remain in her home and be safe and comfortable for the remainder of her life. She wants to be a part of her community, not separated from it.

Kathy said the biggest dream they have is to have resources in their hometown for people with special needs so they can give back to the community. Sara wants to do something meaningful and be able to come home from that experience and have something to talk about.

Sara has decided she'd like to remain living with her mom, but she wants a normal life in the community. When asked what she would like to do if she had an attendant, Sara laughed and said "Go to a bar."

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4.3 Expand "transition assistance services" for consumers in all HCBS waivers, including the HCS waiver program. Transition Assistance Services (TAS) assist Medicaid recipients who are nursing facility residents to set up a household when they are discharged from the facility. Eligible waiver programs include Community-Based Alternatives (CBA), Community Living Assistance and Support Services (CLASS), Medically Dependent Children (MDC), Deaf Blind with Multiple Disabilities (DBMD) and Consolidated Waiver. TAS services are currently not available to those transitioning from state schools/centers or ICFs/MR or those going into the Home and Community based Services (HCS) waiver and should be expanded and made available to these individuals.

5. Invest in community respite alternatives to avoid reliance on state institutions for support, including an expansion of respite services to include caregivers under the age of 65. Respite care provides a caregiver temporary relief from the responsibilities of caring for individuals with chronic physical or mental disabilities. Respite programs are a lifeline for families, yet these services are often unavailable in the community where families need them. As a result, many are forced to rely on institutional settings for respite support which is often an undesirable choice and can be disruptive to the individual with a disability. Funding should be allocated to strengthen the community based respite service system to better support informal caregivers. Policy changes should also be made to allow respite services to be available to all parents, siblings, and loved ones who provide care – not just for those over age 65.
6. Enhance the capacity of the community services infrastructure to better support individuals with complex needs. Specifically:
   
   6.1 Remove barriers and create incentives for providers to provide services and supports to individuals with complex needs in the community.
   
   6.2 Require DADS to collect and analyze data that identifies factors driving admissions to state schools (particularly children) and report those findings to the Legislature. Information obtained on children and other individuals with I/DD at the time of admission to a state school is collected and maintained by the individual facility. As a result, there is no statewide information on the factors that lead to the admission such as medical or family crisis. State data indicates that almost half of individuals with complex needs are currently served in the community. If DADS collected and maintained admission information, state leaders could better evaluate the specific factors precipitating a crisis leading to placement, identify possible community supports, and avoid unnecessary institutionalization.

Progress in Development of Local Cross-Disability Access Structure

Recommendations:

7. Provide sufficient funds to ensure that the Community Safety Net of community support services has the capacity to meet the needs of all individuals with intellectual and developmental disabilities (I/DD). Specifically:
   
   7.1 Build capacity and fund the Mental Retardation (MR) safety net services to support individuals with I/DD in the community. Gaps in the community infrastructure often include the lack of skilled providers, rate structures that fail to reimburse costs for the services, limited availability of services, and providers that are unwilling to develop programs due to liability issues.
   
   7.2 Build capacity and fund the community infrastructure to support individuals with behavioral needs in order to reduce reliance on institutional settings for specialized services and support. Supports for individuals with challenging behaviors are often not available through community programs, creating an unnecessary reliance on state schools to provide these specialized services.
   
   7.3 Build capacity and fund the community mental health and substance abuse supports network to deter unnecessary placements in hospitals and nursing facilities. The 80th Texas Legislature (2007) allocated $82 million in new funds for community mental health crisis to reduce the number of people who are admitted to emergency rooms, jails, and state hospitals. Additional funds should be allocated to strengthen the community infrastructure to serve individuals in the most integrated setting.
   
   7.4 Increase the number of waiver slots authorized for children aging out of Child Protective Services custody. Many children are being unnecessarily placed in institutions when no other option is available when they "age out" of CPS conservatorship at age 18 and have a continued need for residential services. Priority has been given to provide community options to children aging out of Child Protective Services, however this opportunity is only offered if the waiver slots are available. Additional allocation of home and community based waivers set aside for these individuals are needed.
8. Amend the eligibility requirements and service array of Medicaid waiver programs to serve individuals who have cognitive/emotional-behavioral/psychosocial disabilities with or without accompanying physical disabilities. Individuals who have disabilities due to conditions such as fetal alcohol spectrum disorders, traumatic or acquired brain injuries, autism, and others often find they are unable to successfully access the supports they need in the community. There are no appropriate placements for individuals who require 24-hour supervision since facilities are designed for individuals with cognitive disabilities (IQ less than 70) or those requiring nursing care. There are no Medicaid waiver services for individuals who were injured as adults, who do not have a medical condition requiring skilled nursing and who are able to live in the community with supports. Many are inappropriately institutionalized in nursing homes, generally contrary to the intent of the L.C. and E.W. v. Olmstead Supreme Court Decision. Modification of the eligibility requirements and service array of Medicaid waivers would allow individuals with these functional needs to be more appropriately served.

 

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Munoz Family: Pat & Tony

Pat and Tony Munoz

Pat Munoz is a quiet force of nature when it comes to providing the best opportunities for her 25-year-old son, Tony. They live in El Paso, and Tony is diagnosed with moderate mental retardation and a psychotic disorder. Pat had family support early on, but that changed as Tony's behavior became more difficult to manage. The family environment was too stimulating for Tony which resulted in acts of aggression. This behavior, coupled with a lack of understanding, alienated many people — but most importantly, Pat's family. "The hardest thing I've had to deal with was to educate my family," she said.

Pat revealed that at times she was scared that Tony would hurt her. She felt she had no other choice but to institutionalize Tony for one week at the El Paso State Center. It was a very negative experience for both since he came home with unexplained bruises and minor injuries.

Tony was on the waiting list for nine years before receiving Texas Home Living (TxHmL) services. While on the waiting list, respite and habilitation services were provided through the El Paso MHMR. Shortly after his enrollment in the TxHmL waiver, Tony was offered and accepted services through the Home and Community-Based Services (HCS) waiver.

In analyzing services, Pat said that "There are major problems with HCS, and it's not what it's cracked up to be." She explained that she had to give up her job due to inconsistent staff coverage from the providers. She became Tony's foster parent after her provider suggested this, but she took a decrease in pay and lost her medical and dental benefits.

According to Pat, "One of the biggest challenges I face is to get staff to think outside the box. Staff should be taking Tony into the community and teaching him how to navigate in this world. He'll never be able to work if he can't do this, and there needs to be consistent services if it is to be beneficial."

Pat also expressed concern about the day habilitation (day hab) component of HCS. "This is a major place where HCS is lacking. We try to fit the individual to the program vs. fitting the program to the individual. Everyone is different. My son does not do well in a day hab environment. This is something we need to work on with the HCS program."

When asked to identify the three top services Tony still needs that he is not getting, Pat said, "Employment, Employment, Employment." She added that "Transportation is also a big problem as the HCS program does not cover the cost of this service."

Regarding options for Tony's future, Pat said, "We are exploring the possibility of opening up our own business, a shredding paper business." She wants Tony to be employed and part of his community, even if she has to be the one to create the opportunities for him.

Pat noted that Tony volunteered at a nursery while he was in high school but due to not having HCS services when he graduated, he lost his job. She believes that if he had the transition services at that time (HCS), he could have maintained employment. She feels this was a missed opportunity for him.

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Perez-Walker Family: Gloria & Aiden Villasenor-Walker

 

Gloria Perez-Walker and Aiden Villasenor-Walker

For Austin resident Gloria Perez-Walker, waiting years for Medicaid waiver services can only be measured in losses. Her nine-year-old son, Aiden, was born with autism and living with this condition is extremely stressful for a family. Aiden needs constant prompting to complete his daily living tasks. As Gloria explains, "I will ask Aiden to get ready for school and he will come downstairs with his books and back pack on, but he will be completely naked. I feel like I've had a two year old child for nine years."

Aiden can be very aggressive. He has even choked Gloria on several occasions. He also is extremely sensitive to noises, particularly to dogs barking and birds chirping. When he hears these noises, he mimics them and then runs out the door and into oncoming traffic. He wears headphones to help screen out sounds that trigger this flight behavior.

Gloria's relationships with family and friends have changed since she's had Aiden. "I have to constantly explain autism to all of them, and it is tiring," she revealed. "They want to protect and shelter him, and they don't understand the need for him to be independent." Her family and friends expect her to keep Aiden with her for the rest of her life. Gloria states that "If I had a typical child, I would still be married."

Gloria's career and educational goals have suffered as well. She had to give up school and work at times in order to maintain Aiden's Medicaid health insurance coverage and Supplemental Security Income (SSI) benefits.

"I feel like a bad person because I talk poorly about my child just so he can get services," Gloria confided. "The only way to get services for Aiden is to constantly point out how bad he is or all that he can't do so I can get the services he needs. I feel like I have to always look at my child in a negative light."

She added that "Everything is from a needs perspective, so if you're going to get anything for your child, you have to be prepared to state everything he needs in front of a group of therapists and professionals at the drop of a hat. I feel like I'm always fighting for him and that takes up my life. I haven't had a chance to enjoy him."

Despite all she faces, Gloria has great aspirations for Aiden. She wants him to have his own life, become as independent as possible and live in his own home. For this to be possible, however, Gloria needs services now while Aiden is still in the early developmental stage of his life.

They have been waiting for Medicaid waiver services for five years. Aiden came up for the Medically Dependent Children Program (MDCP) but was denied because autism is not considered a medical disorder. Despite this, Gloria knows that early intervention for children with autism is critical if they are to meet their full potential. Each year that goes by without services is another loss for the Perez-Walker family and more critically, another loss for Aiden.

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9. Expand services and community living options for youth with disabilities transitioning from education settings to post-education activities. Youth with a disability who are transitioning into post-schooling activities, services for adults, or community living should have the opportunity and necessary supports, to seek individualized, competitive employment in the community. The "Plan for Improving Employment Services for Texas Youth with Disabilities Who are Transitioning to Community Living," directed by the 80th Texas Legislature (R)(2007) includes recommendations to remove existing barriers and to build a more comprehensive, coordinated system of employment supports and services for youth with disabilities as they make choices about their work and career.
10. Direct HHSC and its Departments (DADS, DARS, DFPS, DSHS) to develop the infrastructure to collect and share common information about individuals receiving services across access and intake systems at the state and local level. Improved communication between HHS departments is critical in serving individuals in a more efficient manner. This involves cross-training of staff on developmental disabilities, cross-referral of individuals to improve access to the right service at the right time, and innovative technologies to facilitate the sharing of information. In 2006, DFPS and DSHS worked to share information about people with a mental health diagnosis who also experienced abuse, neglect, and exploitation to identify problem areas and identify opportunities for change. DFPS and DADS have assembled a workgroup to identify crossover cases. Such collaborative practices should become usual business across the human service enterprise.
11. Ensure that individuals with developmental disabilities, specifically children with special health care needs, are not negatively impacted in efforts to reform the Texas Medicaid system, expand managed care initiatives, and/or restructure the service eligibility infrastructure. Texas has made significant progress in recent years to improve the state Medicaid system. Demonstration projects that promote managed care, integrated care management, as well as modifications to the TIERS eligibility system are a few examples. While individuals with developmental disabilities are not the current target population for these demonstration projects, this population does rely heavily on Medicaid services and supports. As policy changes continue, leaders must ensure that the system changes will not negatively impact the ability of individuals with developmental disabilities to access needed services.

Projection of Future Long-Term Care Service Needs

Recommendations:

12. Require a formal study in Texas to gather data on the types of services selected by individuals with disabilities when they are offered Medicaid waiver supports and use this data to more efficiently fund future long-term supports based on consumer needs. In the past two Legislative sessions (79th, 2005) and (80th, 2007), leaders have allocated additional funds for waiver services through programs such as HCS. This year's target for HCS enrollment was 1338. As of August 1, 2008, 1259 individuals have been enrolled. Of those, 646 have chosen a foster care model, 484 have chosen "own home/family home" and only 129 have chosen a group home/residential setting. This translates to approximately 90 percent who have selected a non-residential model. This information was collected for the most recent waiver expansion; however, this data is not collected on a systematic basis across all waivers. A formal study will develop a stronger understanding of the demand and choice for services in our state which is critical in accurately planning and financing the future long-term service and supports system in Texas.
13. Develop specialized services and supports to allow individuals with developmental disabilities to age in place following the loss of a family caregiver. Assist individuals with developmental disabilities who are aging and their family caregivers in planning for their future long-term care needs. The average age of an adult with a developmental disability living with parents age 60 and older is 38 years. Many family caregivers will age beyond the capacity to provide care in the next 10 to 20 years. Long waiting lists for home and community-based residential services make it difficult for persons with developmental disabilities who lose their family caregiver to maintain their independence and be active members of their communities. Resources are needed to ensure that these individuals are able to remain in their homes and age in place. Persons who are aging with developmental disabilities have unique long-term care planning needs. In addition to planning for their own aging in terms of finances, housing, and health care, many may find themselves in a position of seeking public services for the first time. Specialized assistance must be developed to help families with these unique planning needs.

Consumer Satisfaction and Consumer Preferences

Recommendations:

14. Expand options for Self-Directed Services (CDS, SRO) in Medicaid and non-Medicaid programs (including waivers) that provide long-term services and supports including fee-for-service and managed care programs (STAR+PLUS). Extend self-directed options to additional services beyond personal assistant services and respite services. Consumer Directed Services (CDS) and Shared Responsibility Option (SRO) are vehicles of self-determination for people with disabilities which allow increased control over the services and supports individuals receive and how those services are delivered. The 2008 Texas Health and Human Services System customer satisfaction survey data indicate that many DADS respondents would like to hire, train, and manage the people who are paid to help them. Similarly, the 2006 National Core Indicators Customer Survey and the Participant Experience Survey results indicate that most CLASS CDS respondents reported feeling that they had control over how they spent their money, feeling safe in their home, feeling satisfied with their personal life, and being independent of guardianship. Participation in CDS is low in both fee-for-service and managed care (STAR+PLUS) areas of the state, with the exception of the CLASS program where 41 percent of service recipients are participating in CDS.
15. Transfer the responsibility for quality monitoring of state mental retardation facilities (SMRFs) from DADS to an entity with more administrative autonomy. In a report published in July of 2008, the State Auditors Office cited gaps in the investigation of complaints and incidents involving state school residents. Approximately 41 percent of priority complaints were not investigated within the required 14 days. Furthermore, state schools are both monitored and evaluated by the Department of Aging and Disability Services (DADS) which operates the facilities. Changes should be made to the oversight system to ensure that incidents are investigated properly, that state schools/centers who do not meet safety standards receive appropriate consequences, and that potential conflicts of interest are reduced.
16. Explore quality-improvement strategies such as using self-advocates to provide peer support to consumers to increase safety, prevent abuse and neglect, and improve awareness of community living options. The use of self-advocates who are independent of the service delivery system (functioning similar to ombudsman) is an essential function to improve the quality of care received. Approximately 60 percent of state school residents do not have guardians or others who can voice an opinion or communicate their interests. Peer advocates have experiences similar to those they assist which can increase trust and reliability. Self-advocates serve to provide individual support, peer-to-peer counseling, and education on issues such as preventing and reporting abuse and neglect, understanding community living options, and exercising self-determination.
17. Ensure participation of people with disabilities and family members on state and local level committees that make recommendations regarding policy and the development and implementation of service programs. Individuals receiving services should be at the table when decisions are made regarding the supports they receive. Appropriate funding must be provided within service programs (e.g., long-term care, employment, transportation, etc.) to allow individuals with disabilities to attend task force and committee meetings and participate in the planning process.