Impact Feature Issue on Consumer-Controlled Budgets and Persons with Disabilities

Joyful Care, Inc., Tennessee’s first operating microboard which began operating May 26, 2002, was set up to provide services for our daughter, Joy Elizabeth (Joy Beth) Nichols who suffered severe brain damage at the age of nine years from herpic encephalitis. The brain damage hampered normal physical development of her left side. The herpes virus reactivated in January 2002, destroying the retina in her left eye.

Joy Beth requires 24-hour care. She is non-verbal but vocal, feeds herself (her food is cut into bite-size pieces) but sometimes has to be coaxed to eat slower, and needs assistance in dressing and bathing. Her seizure activity continues to be a challenge. Changes in her medication brought about through working with the Epi Care Center in Memphis, along with use of the vagus nerve stimulator, a device that sends periodic signals through the electrodes to the brain by way of the left vagus nerve in the neck to reduce the frequency and duration of partial onset seizures (similar to cardiac pacemakers), have helped to decrease the length of the seizure. Still, she averages 75-100 seizures a month. The seizure activity continues to weaken her left side; currently she is wearing a left leg brace to stabilize her ankle and to stop the knee from hyper-extending. She also has limited use of the left hand.

We, Joy Beth’s parents, have strong family values, believing that the family who know and love her best should have the responsibility of caring for her needs. The microboard concept has made this a reality. The Medicaid waiver funds come to the non-profit provider agency that her family and friends have formed: Joyful Care, Inc. The most obvious benefit for us in creating this micro-board is that we select and hire the staff to care for Joy Beth. Three of the original four employees hired by Joyful Care, Inc. in March 2002 are still working for Joy Beth. The former residential agency was experiencing a huge staff turnover causing major staffing problems for Joy Beth; the lack of competent, stable, experienced staff was a nightmare. Her behavioral issues occurring at the time were proven to be staff-induced by their lack of knowledge about how to effectively work with her. A benefit of the microboard is that we can train our staff with mandated state training emphasizing Joy Beth’s special needs. Since we developed the microboard, there have been no reportable behavioral incidents, compared to many the previous year with the larger provider agency. Joy Beth is happier, healthier, and more secure with this situation.

Since the microboard is operated by a volunteer board of directors we have minimum overhead, allowing better pay rates and benefits for staff. Joy Beth is currently receiving occupational therapy, physical therapy, speech, and nutrition services chosen by Joyful Care, Inc. Fortunately for us these are independent contractors who bill the state directly, reducing our paperwork and overhead expense. Joyful Care, Inc. also provides personal assistance Monday through Friday from 8am-2pm, allowing Joy Beth to be out in the community as her health permits. This has proven to be very beneficial to her. The same personal assistant has been working with her since January 2003. Acquiring these and other supports and services seems to happen more quickly when all our attention and emphasis is focused on one person’s – Joy Beth’s – needs and quality of life.

The microboard has been ideal in allowing Joy Beth’s siblings, their spouses, and children to take an active role in her care. The board of directors meetings and the Circle of Support take place in the evenings at Joy Beth’s home so that those family and friends who are employed can attend.

We have learned several lessons along the way. One is that attending optional provider meetings and training sessions offered by the state makes filling out reports easier and keeps us up-to-date on any changes. And since we aren’t “business folks,” it’s been important to locate state and other resources to help us learn how to operate a small business and attend to things such as local, state, and federal regulations; taxes; payroll; and insurance. Another lesson is that we need to network with larger agencies for certain mandatory training (CPR, First Aid and Medication Training for Unlicensed Personnel). And a third lesson is that we have better results when we recruit staff through referrals from current staff, friends, and family rather than through paid advertising.

Overall, the microboard has been God’s provision for us. We better understand how “the system” works and doesn’t work. Joy Beth’s quality of life has dramatically improved. Her siblings and their families are allowed to be actively involved in all aspects of her life. Plus, we as parents can sleep at night knowing that the staff caring for her know her and love her.