Hi Mary Lee, 

 

Florida has a waiver for medically fragile children and individuals with Traumatic Brian and Spinal Cord injuries.   I have attached two one-pagers regarding those waivers.  I am not that familiar with the Traumatic Brain and Spinal Cord waiver (note – this is not a dual diagnosis waiver).  

 

However, we have done a lot of work in Florida relative to medically fragile children.  The federal DOJ has sued Florida over the children with medically complex conditions in nursing homes and that there is not an adequate state system to support these children in the community.  The Model waiver referenced above was expanded to a broader medically complex or medically fragile conditions to help address the issue of children who are eligible for nursing home placement (under the institutional Medicaid requirements as a family of one) but not when they leave and return to their families.  However, children must be in the nursing home for at least 60 days.    We found this issue to be very complex with many  parts to it; from the adequacy of the supports available in the community, to the coordination of available services, to the need for alternative placements, and the care received in the nursing home.  In the research we did, we found a great model with EveryChild of Texas.  This model provided the waivers to support the services, the training to parents and providers to care for their children at home, Family Support Homes when the parents were not able to care for their child at home, facilitation services (with Medicaid paying 50% of the costs) to coordinate the different state and local programs to get the family what they need for successful home placement, and state policy to support the approach.

 

EveryChild Texas has a great manual that lays out their entire system, titled A Family for Every Child: Family Based Alternatives for Children with Disabilities.    You can find it on their website at www.everychildtexas.org , in their publications page.     A good contact there is Elizabeth Tucker, who is the Policy Director.  Her contact information is 512-342-0543  or xxxxxx@everychildtexas.org.     The Texas DD Council provided the initial funding to get EveryChild started in Texas.   Also, the Pennsylvania DD Council was developing kits that would enable them to implement this model there.   Last time I talked with them, the contact was Karen Reed.  

 

I would be glad to talk with you further about what we found and what we worked on.  We have had some success with improvements here and there, but not with adopting this model.

 

 

 

Debra

 

 

 

In KY, we are looking for examples of waivers that provide the full range of services for:

 

(1)        Individuals who are MEDICALLY FRAGILE

(2)        Individuals who have DUAL DIAGNOSIS (DD and Mental Health or DD and Acquired Brain Injury)

 

Right now, many individuals are struggling because the services either (1) are not available in their community or (2) waivers do not cover them.  Providers are refusing to work with ‘complicated’ individuals.  There appears to be an increase in the number of families seeking involuntary commitments because they feel they have no good options in communities.

 

We may also need suggestions for how you have addressed issues related to Work Force shortages; durable medical equipment; and a host of other related issues.

 

Any waivers or other information you could share would be greatly appreciated!

 

Thanks,

MaryLee

 

MaryLee Underwood, JD, BSW

Executive Director

 

Commonwealth Council on Developmental Disabilities

32 Fountain Place, Frankfort, KY 40601

Email: xxxxxx@ky.gov

Phone: 502-564-7841 or 1-877-367-5332; Fax: 502-564-9826

www.kyccdd.com

 

CCDD’s mission is to create systemic change in KY that empowers individuals to achieve full citizenship and inclusion in the community through education, capacity building and advocacy.

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