Speaking out for People with
 Intellectual and Developmental Disabilities


VOR and the Kentucky Concerned Family Network Respond to Olmstead Compliance Plan

September 9, 2014

Detailed comments are here. An Executive Summary follows.

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The Kentucky Concerned Family Network (KCFN) and VOR appreciate this opportunity to submit comments in response to the draft Kentucky Olmstead Compliance Plan, released for stakeholder input by the Kentucky Cabinet for Health and Family Services (CHFS) on August 18, 2014. 

Executive Summary

The OCP is very broad and reaches across several different disabilities. It will, if implemented as proposed, benefit many persons with disabilities, negatively impact others by limiting their residential choices, and will cause unintended consequences for an unknown number of persons as new rights are embraced, examined, and experienced without the proper oversight, services and even temporary support.

The limited public comment opportunity is a major concern.

Quotas:
In addition to Strategy 6.3 noted above, the OCP in strategy 6.4 cites a P&A lawsuit settlement against the Cabinet for Health and Family Services (CHFS) that requires 600 persons to be transitioned out of group homes and into community residences over a three year period. The first 100 transitions are to be completed by October 1, 2014, less than 30 days from now.

We view quotas as inconsistent with the letter of and spirit of the Olmstead Supreme Court decision. Quotas are antithetical to, and prevent, individual choice and person-centered planning. Olmstead does not require that individuals be forced out of a good placement against their choice and best interests; indeed the Court required that individuals do not oppose transition to the community. The overall tone of the OCP suggests an ideological deinstitutionalization bias that is unnecessary while seeking to obtain the many rights due to persons with a disability.

The role of families and legal guardians:

The OCP displays a complete disregard for the important role of families and legal guardians. We expressly request the inclusion of “individual choice and need, with required family and guardian input” in the OCP’s goals, as well as an expansion of the Regional Olmstead Committee (Strategy 6.6.) to include ICF family representatives and providers (see Attachment B, OCP redline). Furthermore, while we support mentoring relationships (Strategy 4.4), the OCP must expressly indicate that mentors are only assigned to individuals upon informed consent of the individual, or where appointed, his/her legal guardian, whose decision-making authority is not affected by the appointment of a mentor (see Attachment B, OCP redline).

Assessments:
Although assessments of the person with a disability are mentioned in the OCP, a single specific tool is not defined. In fact, different Kentucky HCBS waivers may use different assessment tools. Regardless of the assessment tool or tools used to create the Person Centered Plan of Care, it is critical that parents, guardian and family members have the right to take part in all assessment or evaluation meetings, and that the tool(s) used is/are available as public information. An appeal process for family and legal guardian concerns should be an integral part of the assessment planning in every HCBS waiver.

CMS Final HCBS Rule:
The Kentucky Department of Medicaid Services and several other CHFS departments are just now beginning a multi-year process to implement the CMS Final Rule HCBS waiver changes in the majority of Kentucky HCBS waivers. It is unclear how the OCP will add to the complexity of this effort, or even if it will be possible to manage both efforts at the same time.

Disclaimer:
Given the breadth and depth of the OCP, the Executive Summary and following comments touch on only our primary concerns. Going forward, KCFN and VOR expressly request full inclusion in any future planning, drafting and implementing effort.

VOR Submits Testimony for Record Asking Senate to Prohibit Federal Funding for Forced Deinstitutionalization; Hundreds of Choice Advocates Share Their Support

VOR is a national organization that advocates for high quality care and human rights for all people with intellectual and developmental disabilities (I/DD).  VOR calls on the Senate to prohibit the use of U.S. Department of Justice appropriations in support of deinstitutionalization activities which evict eligible individuals with I/DD from their HHS-licensed and funded Medicaid homes, in violation of federal law.

Read VOR's Testimony Here

Nearly 500 advocates for family members and friends also submitted a statement for the record in support for VOR’s testimony.

VOR Submits Testimony for Record Asking Congress to Prohibit Federal Funding for Forced Deinstitutionalization; Hundreds of Choice Advocates Share Their Support


VOR is a national organization that advocates for high quality care and human rights for all people with intellectual and developmental disabilities (I/DD).  VOR calls on Congress to prohibit the use of U.S. Department of Health and Human Services’ (HHS) appropriations in support of deinstitutionalization activities which evict eligible individuals with I/DD from their HHS-licensed and funded Medicaid homes, in violation of federal law.

Read VOR's Testimony Here

See related Senate Testimony

588 advocates for family members and friends also submitted a statement for the record in support for VOR’s testimony, and many others submitted their own testimony.

Home is Where the Heart Is

The Coalition for Community Choice (CCC) is a unified voice for increasing options and decreasing barriers to housing choices.

By Desiree Kameka, Director of Community Education & Advocacy, Madison House Autism Foundation; and Tamie Hopp, Director of Government Relations & Advocacy, VOR; Originally published in EP (Exceptional Parent) Magazine (April 2014), excerpts posted here.

Did you know…

  • In the next decade, over 800,000 on the autism spectrum will transition to adulthood. 
  • Almost all states have waitlists for accessing adult support services, yet the average growth of funding nationally is only 3.2%.
  • Almost one million individuals with intellectual and/or developmental disabilities (I/DD) are still living with caregivers over the age of 60.

In response to these staggering statistics, there is a movement of families and local organizations working together to create sustainable solutions to this national housing and support service crisis. They are organized and gathering information at conferences, many have joined together for advocacy as the Coalition for Community Choice, and are sharing solutions at the new Autism Housing Network.

 
 
Read full article (EP Magazine, April 2014)
 
 

VOR Webinar Series: Regional Meetings - The Need for Advocates to Act Global and Local

Hosted by VOR's David Hart and Geoff Dubrowksy, VOR's "Regional Meetings: The Need for Advocates to Act Global and Local" Webinar, was held Thursday, March 20 to discuss VOR's new vision for regional meetings between VOR members, families, guardians and like-minded advocates. We discussed the advantages to state-level and national advocacy, networking, and development when advocates in a region have opportunity to connect with one another. 

To listen to a recording of the webinar, contact Tamie Hopp at This email address is being protected from spambots. You need JavaScript enabled to view it. for a recording (MP3 format).

To download the presentation (PDF), click here

Coalition sends letter to CMS re: New "Community" Rule

March 5, 2014

A letter signed by 41 organizations, including VOR, was sent this week to Marilynn Tavenner, Administrator for the Centers for Medicare & Medicaid Services. Organizations, representing the Coalition for Community Choice, expressed “appreciation of the earnest effort to balance many perspectives in your consideration of Home and Community-Based Services (HCBS) Settings Final Rule (CMS 2249-F/2296-F),” while also requesting that CCC have “opportunity to review proposed State Guidance Letters and provide input before publication.”

Read letter here