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Published Sunday, June 12, 2011 12:10 AM
Faye Miller and her husband, Craig, help their son, Garrett, 14, walk with the aid of his walker at their home in College Station. Garrett is severely developmentally disabled and suffers with cerebral palsy and autism.
Steve Starr watches as his son, Jason, 32, uses toys for therapy at their Bryan home. Jason suffers from cerebral palsy.
Craig Miller gives his son, Garrett, a kiss on top of his head at their home.
Garrett Miller is a 2-year-old child stuck in a teenager's body. But unlike a toddler, the 14-year-old doesn't talk and can barely walk without assistance.
Most parents are able to send their children into the world to care for themselves, but Faye and Craig Miller of College Station recognize they'll be doing most everything for their son the rest of their lives.
Their love is unconditional.
Born with cerebral palsy and autism, Garrett Miller receives financial assistance for his care through the Texas Department of Aging and Disability Services' Home and Community Based Services program. The funding allows his parents time to rest and re-energize from caring for him 24/7.
"Even with the assistance provided by the HCS program, taking care of him is still a great challenge to every member of our household," said Faye Miller, who has older and younger children. "But we all happily sacrifice in order to help provide the best possible quality of life for Garrett."
The state budget bill passed by the 82nd Legislature cuts health and human services funding by 17.2 percent. Programs for those with intellectual and developmental disabilities will be affected by the cuts. The Millers and families across the state are awaiting the final version of the budget to learn how the budget cuts will be implemented as the new biennium begins on Sept. 1.
Catastrophic cuts
Faye Miller said the HCS program is the only way she and her husband can each maintain full-time jobs to pay the mortgage and taxes, provide for their three children and pay for in-home caretakers for Garrett, who cannot be alone.
"Any cuts to DADS would be devastating to us personally and to other individuals with disabilities and their family," she said. "If this happens, many of these people would be left with no assistance whatsoever and we feel the long-term costs, both human and monetary, would surely outweigh any short-term benefits."
The Millers are one of more than 100 families benefiting from assistance from the Brenham Outreach Advisory Council, a nonprofit community service organization serving people with development disabilities.
Shelley Campbell, chief executive officer for the advisory council, said the budget cuts could be catastrophic. The funding creates opportunities for the disabled to live in a home community rather than institutions, she said. Cuts would destroy the provider base that has been developed, leaving only institutional care. The cost to provide services for one person in a state institution is four times higher than the cost of providing one person HCS Medicaid Waiver Program Services.
Campbell said lawmakers should ensure that current service levels for all community-based services and support for people with disabilities is at least maintained. Texas lawmakers need to realize the budget cuts will be devastating to individuals, families and local communities. Campbell said providers such as her organization will sustain a 25 percent reduction.
"That's huge," she said.
She said the council receives between $275,000 and $300,000 a month, depending on the number of clients it has enrolled.
"I know that when there was a 2 percent cut in February, that was about a $6,000 hit for us," she said.
Campbell said she's concerned families such as the Millers who utilize the consumer-directed services through state funding won't be able to hire the help they need to care for family members with disabilities.
"It allows families to have a lot more flexibility and control," she said of the funding.
Miller said her family has been utilizing the HCS for three years. They were forced to put Garrett in an institution previously -- something they were unhappy about -- because there was a waiting list for the services. They are able to hire people who will come to the house and help them with supported home living activities, like teaching him to learn basic living skills, she said.
Most cost-efficient model
The Providers Alliance for Community Services of Texas, a nonprofit association serving about 5,000 intellectually and developmentally disabled Texans, said cuts could result in more than 25,000 people being displaced, more than 400 providers closing their doors and thousands of health care workers sent to unemployment lines.
The Home and Community Services waivers provide intellectual and developmental disability services for people in intermediate care facilities, group homes, foster care home or in their own homes. The services include nursing care, help with medications, assistance with activities of daily living, rehabilitation and necessary therapies.
The providers alliance reported there are not enough beds in state-supported living centers across Texas to serve the number of people who need the help. Institutional care also costs three times as much as community-based care.
"They just need to understand that with these cuts that are happening or will happen to community services, it is not saving them anything," Campbell said of state lawmakers. "When you cut the most cost-efficient model of service, there are people who get squeezed out of that and they end up in the most expensive model of service."
Without adequate services, she said, many of these individuals end up in emergency rooms, psychiatric hospitals or jail, costing taxpayers more. Earlier in the session, it appeared the cuts would reach almost 30 percent. Recent news suggests that number may only be around 1 percent. That would be in addition to the 2 percent cuts implemented in February and reimbursement reductions in 2010.
Exhaustion
Vickie and Steve Starr of Bryan say they've benefited immensely from the Brenham Outreach Advisory Council.
Without the agency, there would be no sleep -- just exhaustion -- in their lives, they agreed.
For their son Jason's first 16 to 18 years, it was just the couple taking care of him. Now they are able to have a nurse in the home eight hours a day.
Jason, 32, has cerebral palsy, is mentally handicapped and struggles with seizures. He has to be fed through a feeding tube due to swallowing difficulties. Vickie Starr said someone has to be constantly around him because he has drainage and phlegm problems in his mouth due to the swallowing difficulties, so his mouth has to be suctioned to avoid aspiration.
Through the Brenham Outreach Advisory Council, she said, they've utilized the Home and Community Based Services program since 2001. It allows the family to have a nurse from 7 a.m. to 3 p.m., and then another one from 3 to 11 p.m. She said while the couple is fortunate to be able to have two nurses, the days are difficult when one or both of the nurses are not able to work.
"Last week I had a nurse maybe twice during the day and twice during the evening," she said.
Having another person in the home allows the couple time to sleep, Vickie Starr said, adding that she often stays up at night to care for Jason. It's also dramatically helped reduce Jason's visits to the emergency room because of the knowledge and assistance of a trained nurse.
Starr said her husband was forced to retire in March because her health was deteriorating from lack of sleep due to taking care of Jason.
"It's very hard," she said. "Once in a while, my husband and I can go eat lunch together. That's very rare."
She said she doesn't know what she would do if state budget cuts prevented them from being able to have nurses working out of the home.
"I understand they're in a tight bind, but I know there's money there somewhere," she said. "We just want to be able to function and be able to take care of our family and have our son at home."
Source: http://www.theeagle.com/local/Families-with-disabled-fear-cuts
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