Prepared messages by Dr. Denver Fox and Sheryle Hutter for:

Presented at Atlantis/ADAPT in Denver, Colorado on April 7, 2011 at an event sponsored by the Colorado Cross-Disabilities Coalition.

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Message from Denver Fox re:  Waitlists and using resources such as Federal Matching Funds to County Mill Levy Funds to increase DDD income by $38 million.

Thank you for inviting me to speak today.

I am Dr. Denver Fox, the father of a 43-year-old son with profound developmental disabilities. I am the founder and coordinator of NOEWAIT, the National Organization to End the Waitlists and PAD-CO, Parents of Adults with Disabilities in Colorado. I worked extremely hard with teams of persons in this room and others three years ago to get Colorado Amendment 51 passed, which would have ended the years-long waitlists for services for an estimated 12,500 individuals, mostly adults - with intellectual and developmental disabilities in Colorado.

It’s not just Colorado. Across the country there are hundreds of thousands of individuals waiting in almost every state for services such as employment assistance, therapy, day programs, residential services, transportation, and training. These individuals are also faced with the inability to move from state-to-state and maintain their presence on the wait list and/or receive continuity of services, as they go to the bottom of the waitlist in the state to which they move, and start all over again.

Individuals with developmental disabilities leave the school systems at age 21, after many years of expensive education, and then step into a world of “nothingness” with the only supports being provided by a parent or parents, who are typically exhausted and perhaps broke from providing 24/7 care for 21 years.

We believe that we have some great ideas for reducing the waitlist and making the system more efficient. For example, there are some options for additional funding that are not being utilized. One is that 6 counties in Colorado have voter-approved county mill levies providing $38 million dollars in tax revenues. This $38 million could be matched by the federal government under the Federal Medicaid matching program, providing an additional $38 million, if we could get the County Commissioners and Community Centered Boards on the same page. The tremendous efforts of several of us in this room in this regard have utterly failed to date, despite both HCPF and DHS providing appropriate procedures to accomplish this task.

We believe that every option for additional funding and greater efficiency needs to be fully explored and utilized, and we have additional thoughts and ideas which we would wish to share with you at an appropriate time to save dollars, increase efficiency and provide for more services to individuals on the waiting lists. We encourage you to utilize the expertise of those of us “in the trenches” to make a better system for Colorado.  We will give gladly of our time.

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Message from Sheryle Hutter re:  Family Caregiver Act

Good afternoon and thank you for the opportunity to speak with you this afternoon.

I am Sheryle Hutter, a member of PAD-CO, Parents of Adults with Disabilities of Co. and CCDC, Colorado Cross Disability Coalition.

I am the mother of two disabled adult sons and I myself have disabling conditions. Therefore I know how important it is that you as directors of three very important divisions within our state government understand programs that can and will impact our very lives.

Today, you have heard cost saving ideas, suggestions that can make a difference for the state and not at the expense of the disability community.

I am here to talk about The Family Caregiver Act, this care option, when finally and fully implemented can be a huge benefit to all involved.

The Family Caregiver Act is the result of 2008 legislation that sought to right the wrong associated with individuals with disabilities remaining in their family homes while receiving services. With this option not only can the person remain in the family home but family members can reside there and if the option of “family care giver” is written into the clients service plan, family members may be paid a caregivers.

This option is bound to save the state dollars and will, when appropriate allow stronger benefit for the client.

Although this legislation was passed in 2008 and a study group was formed early on it has been and continues to be a rocky road to full implementation.  Rules, time delays, lack of communication, and changing of responsible staff in DHS and DDD have dragged this operation out far to long.

I have been a member of the Family Care Giver study group since its inception late in 2008 and finally early this year the option begins to implement, sadly, although we are now being included around the table more there is often little or no interest in input from us the consumer.

A pilot to include 10 families was tested during 2010, 6 client/families began the pilot but only 3 continued because the program was simply too invasive.  The division reports that the 3 clients and families that remained in the pilot will now be part of the implementation, however, cannot say how many clients are now including Family Care Givers in their service plans.

Although the division is supportive of the FCG option, CCB’s are taking the position that investing in family members as caregivers is just TOO RISKY which certainly is unrealistic because many families have been providing care lifelong.

It is time for the feet dragging to stop and full implementation to really begin, however, we see the same kind of resistance from CCB’s that we have experienced with other programs in the past and the existing “conflict of interest” that has surfaced with case management and service. Parents are being discouraged by their caseworkers and information is limited or lack consistency.

There are established guidelines, rules are being enacted, information guides and contract agreements are in draft, training has begun, and the option as of Feb 2011 is now available but because there is continued resistance from CCB’s and the  process takes so long, often months for one action - therefore this great option continues to lag.

Implementation was to have been in place by early 2009, it is now early 2011 and still implementation is stalled. Please place a priority on this program and expedite the process so this can finally be a win for all involved.

 Thank you and I am happy to answer any questions.

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