A Tennessee Division of Mental Retardation Services (DMRS) decision to cut funding and services has angered and scared parents of children with intellectual and developmental disabilities.  

“DMRS is over-budget and the problem requires immediate attention,” wrote Deputy Commissioner Stephen Norris in a Jan. 18 letter to consumers, family members and guardians, outlining his plan to reduce Statewide Home and Community-based Waivers available under the Medicaid program by 6.1 percent.  Self-determination and Arlington waivers are not affected.

Opponents have said that the reductions affect people who are the “most fragile.”  “The recent change has not only caused provider agencies financial hardship, it also has made it impossible to protect our citizens from harm,” said Carlene Leaper, executive director of the Arc of the Mid-South, a support agency for people with mental retardation and developmental disabilities.

A public forum earlier this month gave interested consumers and family members in West Tennessee an opportunity to learn more about the cuts and their impact. Held at the Home Builders Association in Cordova, the forum was sponsored by People First of Tennessee, Tennessee Disability Coalition, Disability Law & Advocacy Center, Middle Tennessee Advocacy Center and the ARC of Tennessee.

Cost saving measures called for shared housing, fewer personal attendant hours, and reduced therapies along with a change in eligibility for therapy to “medically necessary,” a 3-month approval limit with automatic stop until re-approved, and funding through TennCare instead of DMRS waiver. Other protocols implemented cuts in payment to all providers, meeting with providers to ask for additional service cuts and a change in the way ICAPs are scored.

ICAP scores determine the level of state paid services for each service recipient, said Kathleen Wickham, board member of a service provider and the mother of a 25-year-old man affected by the changes.  Since each score has a defined level of service, she said, a change in score can reduce service even though the client’s needs have not changed.  

Carlene Leaper (left), executive director of a support agency for people with mental retardation and developmental disabilities, and Kathleen Wickham, a service provider board member, said state reductions affect people who are the “most fragile.” (Photos by Warren Roseborough)

Some 70 people, including Leaper and Wickham, attended the meeting. A number of people took voiced their concerns about quality of life, housing and affordable health care.  

“DMRS has not completely met our daughter’s needs,” said Carrie Setbacken, who has a daughter who is deaf, legally blind and mentally retarded.  “And these changes are threatening to destroy everything we have worked for.”

Setbacken said ther daughter was educated and trained at the Helen Keller Institute and made great strides.  She lives away from home with the help of a personal attendant provided through the statewide waiver program.

Carrie Setbacken, who has a daughter who is deaf, legally blind and mentally retarded, said “these changes are threatening to destroy everything we have worked for.”

“The state is trying to force a roommate,” said Setbacken, who believes a female room mate of comparable intelligence would be best.  But she doesn’t trust DMRS to make the decisions in her daughter’s best interest. She fears mixed gender housing could lead to rape and that a violent or more mentally advanced roommate could put her daughter in jeopardy. She also wants that housing near the area where she lives in case of emergency.

At the meeting, Wickham represented her 25-year-old son, Matthew, who has a dual diagnosis of severe autism and mental retardation and lives in a supported living home in Arlington operated by West Tennessee Family Services.  As a service provider, WTFS is affected by the funding cuts.  A WTFS board member, Wickham believes consumers and family members nor service providers had input into the plan.  

“I have not seen a plan to seek solutions from service providers for solutions to the financial crunch, as called for in a democracy,” she read from a prepared statement. “Nor, have I seen an effort by the state to communicate with affected families about the cuts.  Nor have I seen a willingness by the administration to share the burden caused by this financial crunch.”  

However, Tony Troiano, director of communications for DMRS, from his office in Nashville, said “DMRS has a plan and is working with providers.  We’re looking at each individual support plan (ISP) – the services they receive and are reassessing that individual’s services to see if everything is medically necessary.”  Troiano said DMRS has also instituted in-house reductions, such as a 5 percent reduction in operating expenditures and freezes in hiring and travel, and that they are exploring other measures.

The ISP reassessment was one of Wickham’s chief concerns.  

“I wait in fear for the day I am informed state evaluators start examining my son’s records, seeking to reduce his therapies and community supports,” Wickham said at the forum. “For that is their goal – not to determine the support he needs, but rather to decide what supports he can do without whether they are needed or not.”  

Troiano outlined those services affected, which include behavior services, physical, occupational and speech therapy services, personal assistance, residential services, day services, support coordination, respite services, nursing and nutrition services and transportation.  

Thanks to personal assistance services, Matthew holds a part-time job. Wickham fears that without support staff he will spend his days watching television.

Tammie Taylor, a downtown Memphis resident, has eight-year-old twin boys who have multiple disabilities. She is concerned that state changes will threaten respite services that provide her with time to do errands or relax.

Tammie Taylor, a downtown Memphis resident, was concerned about the loss of respite services that provide her with time of her own to relax or do errands.  She encouraged DMRS to cut its staff rather than taking away the home and community-based support she needs to help manage her eight-year-old twin boys who have multiple disabilities.  

Taylor, 32, is a single parent with four children, including the twins – Cornelius who cannot walk, talk or feed himself, and Calvin who, like his brother, has ADHD and asthma.

“I just want someone to help me stay sane,” said Taylor, after inviting DMRS to come to her house to lend a hand.  “Anyone in that office telling me ‘no’ can come and help me.”

The decision to offset anticipated budget overruns by reducing funding for statewide Home and Community-based Services (HCBS) was announced by Norris in December.

Troiano said Self Determination and Arlington Waiver programs are not over-budget, but spending is out of control in the Statewide Waiver program.  

“What has happened had made Tennessee third in the nation in average cost per person for service, behind Delaware and Maine. This fiscal year, we budgeted $209 (per day, per person) and based on expenditures in the past 7 months costs rose each month to $233. We had to do something about it.”  

Troiano said 5,800 people are on the waiting list for services and budget over-runs could have been used to provide some of those people with services.

“Let me be perfectly clear,” Norris stated in his January letter, “that we are not cutting the DMRS budget, but just trying to get it back to its intended level. The health and safety of the persons DMRS supports is of the highest importance.”

According to the Disability Law & Advocacy Center, appeal rights are available for individuals with mental retardation enrolled in a Medicaid waiver program if services are denied, stopped, delayed or reduced for any reason, including due to cuts in provider reimbursement rates. Those so affected should contact their regional DMRS office to obtain more detailed information about appeal rights.  To file an appeal, they should contact TennCare Solutions at 1-800-878-3192. Other information is available online at http://preventdmrscuts.com and on the state website at www.state.tn.us/dmrs.