The WVU Center for Excellence in Disabilities in Morgantown is conducting a free support group for teens with high functioning Autism or Asperger’s.

Below are WVA’s comments for the draft TBI Waiver Manual’s public comment period:

West Virginia Advocates, Inc.

COMMENTS ON TRAUMATIC BRAIN INJURY (TBI) WAIVER MANUAL

Submitted January 30, 2012

The first comment that I feel compelled to make is that WV Bureau of Medical Services (WVBMS) has once again violated federal law in posting this public comment period. Public comment periods are supposed to be just that, an opportunity for the public to provide input. It is not the intention of public comment periods to be just for agencies to respond, although they comprise one important segment of public comment. However, people with disabilities who use the Medicaid programs, grassroots advocacy organizations, and interested citizens should all be provided with ample opportunity to provide comment if they choose to do so. When the I/DD HCBS Waiver application that was being sent to Centers for Medicaid and Medicare (CMS) was posted for public comment, BMS failed to post information about how the document could be accessed other than online and how comments could be submitted other than online. They also failed to provide information about locations where a paper copy of the document could be reviewed at no cost to the public. There was no notice, as is required, informing the public how they could request and access alternative formats for review if they required this due to a disability. That was particularly egregious considering that this is a federally funded program for persons with disabilities who may very well need these accommodations to participate in the review process. In addition to accommodating disability needs, providing access other than online is critical because data suggests that in West Virginia fewer than 50 percent of households have computer access and even fewer households have internet access which is required to participate in the review process the way it is set up. Many geographic areas of WV have limited or no affordable internet access due to lack of adequate physical infrastructure. When I identified this problem at the time of the first public comment period, I contacted Marcus Canaday by phone to discuss this violation of federal law by BMS, and he assured me that there had been a glitch and that indeed BMS had a person who was responsible to assure that all documents offered for public comment were properly posted in full compliance with federal law. He was unable, however, to explain why the mistake occurred. I agreed not to act on BMS’s failure to comply with the law, acknowledging that mistakes happen. Now the second round of public comment is taking place, and the public comment period is being posted in the exact manner as the first one; total non-compliance with federal law. Obviously Mr. Canaday’s assurances to me that future posting would be done in compliance with the law were meaningless. This problem must be resolved by BMS. If BMS persists in failing to compliance with federal law West Virginia Advocates will have no choice but to file a complaint with the U.S. Department of Justice.

While I understand that the purpose of this public comment period is to address the contents of the manual proposed for implementation of the program and not for comments to change the structure of the program I find it essential to comment on the structure of the program as this program appears to have some very significant flaws that may be expected to decrease the success of the program and the usefulness of the program to the TBI community, these are concerns that WVA expressed during the public comment period 18 months ago when the intent of comment was to address the structure of the program. Unfortunately it appears that managers of the program choose not to make changes in the structure based on those comments. Our concerns about the structure of the program are as follows:

512.5.11 Medical Eligibility Criteria Pg. 20

1. The criteria for eligibility for this program seems poorly coordinated with the reality of individuals with traumatic brain injury who are medically ready to live in the community. The Pre-Admission Screening Form (PAS) does not adequately address some of the most primary problems/deficits /needs typically experienced by TBI survivors. Orientation is a good example. The entire idea behind cognitive rehabilitation services, a service included in this waiver package, is in part to restore cognitive orientation, however Item #26 g. on the Description of Deficits chart on page 20 is a clear example of an inappropriate requirement. If an individual with TBI has to be totally disoriented or comatose to qualify in the area of orientation (a highly significant indicator with TBI) how are they appropriate to function safely in the community? They would not be ready for discharge from a facility. They certainly would be at high risk in their own home with the amount of services provided on this waiver. They surely are not ready to benefit significantly yet from cognitive rehabilitation. While we are aware of the requirement that individuals eligible for this waiver have to demonstrate that they need a nursing home level of care, nowhere in the CMS requirements does it say the same tool has to be used as is used for nursing home admission eligibility. In fact there is a letter from CMS to Medicaid Directors clarifying that while it is necessary to establish a need for the level of care, the need is not expected to be identical to the needs for the nursing home level of care. It is unfortunate that BMS has chosen to use the PASS as a screening tool for eligibility since it clearly is not specific enough for good evaluation of TBI survivor needs.

2. Page 20- Section below the PASS Chart makes no sense. The bullets below the opening sentence (starts with first bullet follow a set schedule) are the criteria for qualifying for a score of Level VII of the Ranchos Los Amigos Scale. Why is it here when the qualification for the Waiver is Level VII or below? The lower levels do not relate to this statement at all and someone for instance on level I-IV absolutely would not be able to do the things listed here in the manual which reads as if they have to be able to do those things to be eligible?

3. It is totally unrealistic to expect the limited number of hours of personal care provided by this program to maintain a safe living environment for an individual with traumatic brain injury whose scores on the Ranchos Los Amigos Scale id Level II or lower. It is also a misdirected use of resources for a home and community based program. The first four levels of this scale are as follows:

   Level I: No Response
   Level II: Generalized Response
   Level III: Localized Response
   Level IV: Confused-agitated

   Clearly anyone scoring within these levels needs inpatient rehabilitation, medical or long term care and would be at risk in their own home in the community and would require 24 hour supervision for safety, if their other needs could be met in a home setting.

   Levels five through seven are:

   Level V: Confused-inappropriate
   Level VI: Confused-appropriate
   Level VII: Automatic-appropriate

   Anyone scoring within these levels might be able to function in their own home in the community, but would require close 24 hour supervision, except possibly level VII. The Waiver is not providing 24 hour services so why are they limiting eligibility to people who require this?

4. Based on the eligibility requirements we are concerned people will qualify for slots who score on the lower levels of the Los Ranchos Amigos Scale and then the slots will remain vacant because the person has not progressed far enough while in the facility from which they applied to be medically ready for discharge to a community setting. Community based TBI resources are badly needed in WV and it would be a tragedy to tie funds up in a program for whom applicants who qualify cannot actually use the services.

512.5.1.2 Initial Medical Evaluation

1. Page 22 – G. – line 6 - Wording should be changed from “notice of free legal services” to notice of resources for free legal services. The wording used now suggests those services will be provided, something APS Healthcare cannot promise.

2. Pg. 22- Paragraph below J. What supports are provided to explain to the consumer or their representative what the Traditional and Personal Options are and what the differences are between them? This is much too complicated to simply mail out a form, tell them to check a box and return. Do they have a manual at that point? Do they get case management services and/or fiscal intermediary services to assist them with making this choice? If so that should be written in the manual. If not it should be added.

512.1 Definitions

1. pg. 5 Abuse – If this is intended to be a definition for physical abuse it needs to be titled that way. It also needs to include death as well as injury. If it is intended to be a general definition for abuse it is inaccurate and inadequate.

   While sexual and financial abuse are defined elsewhere in the definitions section, psychological and verbal abuse are not defined anywhere in this section and need to be added.

   Also absent in this definition are acts of humiliation of the incapacitated person such as photos and videos.

   The reference to “imprisonment” makes no sense as it is written related to abuse. 2. Inappropriate use of photos, video tapes, phone cameras, intranet, social media, computers etc. The reference to imprisonment as written does not make sense. Imprisonment, if done by appropriate legal means by law enforcement through the courts is not abuse and this definition implies that it is.

2. Page 5- APS Healthcare ASO- Why is APS listed in the title of the definition? Definition appears to be intended to define an Administrative Services Organization, not APS specifically? What if the contractor changes during the 5 year period of the Waiver?

3. Page 6-top of page – Community Integration – This is an incorrect definition of community integration. Community integration is not defined by or limited to providing services. It is the experience an individual in their community regarding their relationships with others, including, but also going beyond service providers. It also includes their ability to live as independently as possible and to experience as much self-determination as they are capable of and to live a life based on what is meaningful to them, not their service providers. Definition should be rewritten with the focus placed on the consumer and not the provider of services.

4. Page 6- 3rd down - Emergency Plan - Needs to state not only who, but what actions are to be taken and needs to be consumer specific. This definition reads as if it could be generic based on location.

5. Page 7 - Neglect – Definition needs to have death added to it as neglect can result in death as well as injury.

6. Page 7 - Participant Direction – Wording of definition does not make sense? It reads that the person with the disability or their representative is participant direction?

7. Page 8 – Sexual Abuse/Sexual Exploitation – Needs to include use of photos, videos, cameras, cell phone cameras, intranet, internet, social media and other graphic or electronic mediums that display sex organs.

512.3 Provider Agency Certification

1. Page 9 – K. Written policies and procedures for member transfers. – does this mean each provider agency makes their own individual policy on how to do a transfer?

2. Page 9 – L. Written policies and procedures for the discontinuation of member services. Does this mean each provider agency makes their own individual policy on how to do a transfer?

If this is the case it will create confusion and significant risk for participants. BMS should have the policy for these two important activities and all providers should be required to follow the BMS policy.

512.3.2 Initial/Continuing Certification of Provider Agencies

1. Page 11 - 2nd paragraph – The use of wording “persons employed” entering into a provider agreement is confusing. Aren’t the “persons employed” the employees of the Personal Options representative? Isn’t the Personal Options representative the employer thus the “provider”, not their employees?

512.3.5 - Personal Attendant Service Staff Requirements

1. Page 13-Paragraph 2 - Training is required to be competency based, however there is no description of how competence will be evaluated or measured for items C, D, E, F, G, H, I, and J? A and B have competence measures built into the training.

2. Page 13-Paragraph 2 – list – J – Is there a requirement for a DDHR approved method of Crisis Intervention Training to be used? For safety of staff and consumers that should be required and stated clearly in the manual.

512.3.7 – Cognitive Rehabilitation Therapist Qualifications

Page 14 end of paragraph 1 - LBHC staff and independent professionals providing CRT to members must also be certified or be in the process of attaining certification by the Society for Cognitive Rehabilitation (SCR).

1. WVA has been requested to participate in meetings and conference calls regarding this requirement. There is very great concern by the TBI/SCI Board as well as the WV Brain Injury Association, Health South and other providers of TBI services that there are no professionals in WV that meet the requirement stated above and that there is little interest in obtaining SCR certification due to the cost, length of time required and limited opportunities to earn income providing this service. It appears that professionals obtaining certification in WV are using a different certifying entity. We are very concerned that there will be funding for this service, but no ability to access the service due to a lack of providers who meet the qualifications of this manual.

512.3.8 - Criminal Investigation Background Checks and Restrictions and Medicaid Exclusion List

1. Page 15 –Paragraph 2 – line 1 Wording does not make sense? Employee or the employee?

2. Page 15-Paragraph directly below list ending in R. – Who is required to take the “appropriate action”?

3. Page 15- last paragraph – wording does not make sense? Check the check?

512.3.10 – Involuntary Agency Closure

1. What is the BMS protocol for assuring TBI participants have a continuation of services and provider choice if BMS closes an agency involuntary and where is that written protocol located?

512.4 Incident Management Overview

1. Page 17- Critical Incidents-sub-bullet 1 – Criminal activity needs to be separated from suicidal activity and made a separate bullet.

2. Page 17-Bullet 6 – physical environment usually refers to actual physical environment. This sounds like you are referring to the overall working environment rather than only the physical environment?

3. Page 17-Bullet 7 – This does not make sense? It says incidents that do not compromise health and safety of the member, but the scenario described definitely would compromise health and safety of the member?

4. Page 17 & 18 make reference to numerous situations in which there is a statement at the end “that does not compromise the health or safety of the member”. However I could find no statements directing what should happen if that same situation does compromise the health and safety of the member? Is that located in the manual?

5112.4.2 – Incident Management Tracking and Reporting

1. Page 19- paragraph 2- PPL responsibility – Given the critical life safety issues involved in incident tracking and reporting those responsibilities should either be stated in this manual or should be available as information that can be publically accessed and how to locate that information should be specified in the manual.

512.5.1.1 Medical Eligibility Criteria

1. Pg.22 – I. – How long will a slot be held open for the member to begin services? This is not defined in the manual. Since all applicants are in facilities at time of application this is important because it could be days, weeks, months or even years before they are medically clear to transition from the facility to a community setting. Unfortunately the way the application requirements are structured there are no specifications regarding readiness to return to the community, only level of functional deficits.

512.5.1.3 Medical Reevaluation

1. Page 23-list C. - This is embedded in the middle of B. and needs to be moved out on its own.

2. Page 23-list F. – Acronym CMA is used. What is this? If I cannot figure it out probably the public using this manual will not be able to do so either.

3. Page 23-list I As recommended earlier wording on notice of free legal services needs to be changed to resources for free legal services as APS cannot assure they will receive those services. Also concerned that information in I. states that appeal has to be submitted within 13 days of the notice date. That needs to be changed to 13 days from the RECIEPT of the notice.

512.8.1 Six Month (6) and Ongoing Service Plan Development

1. Advocate should be added to the list of participants.

512.11 Case Management Definition

1. Case Management activities specific to Participant Direction include, but are not limited to: C. – This is worded incorrectly. While the CM certainly can ask the member about their desire for a representative and may bring to the team a recommendation that they think a representative may be necessary, only the courts can determine if a person needs a legal representative. I am totally confused by the use of the language of a non-legal representative. An individual retains their own right to self-determination (their own guardian) unless a court appoints a guardian regardless of their level of functioning and there is no such thing as a non-legal representative in terms of doing treatment planning and signing treatment authorizations and plans. If a person has a health care surrogate appointed under the law that is a legal representative under state code. We recommend changing this language.

512.11.3 Ongoing Case Management Services

1. Monthly phone contact with member – This is a totally inappropriate expectation for any individual with a TBI who scores VII or less on the Los Ranchos Amigos Scale. The member can be expected to be experiencing significant cognitive, memory and possibly speech deficits, how are they supposed to provide the information required in this section? Face to face would be a challenge, but by phone is an unfair and unrealistic expectation for both the CM and the member and will at best result in inaccurate information and holds the potential for placing the member at risk for their life and safety.

512.1.2 Personal Attendant Services

1. Page 29, paragraph1 – Language should be expanded to include the list of facilities that members are allowed to be in when they apply. The purpose is to prevent institutionalization, not just a nursing home.

2. Page 31-H- We are concerned that there is no requirement to report any problems with the member taking medications either here or in F requiring incident reporting. Given the memory loss issues and confusion typical of a person with a TBI this could be a critical issue.

512.13 PARTICIPANT-DIRECTED GOODS AND SERVICES CODE, UNIT, LIMIT AND DOCUMENTATION REQUIREMENTS

1. In the list of non-allowable services monthly internet service is listed. This concerns us. Use of the internet is a valuable cognitive restorative tool, provides community integration and increases potential for life safety as well as being what Americans living in the community do. Why is it not allowed? For Personal Options, at training and meetings I have attended for ID/D Waiver, PPL repeatedly has said that incident reporting needs to be done by the representatives into the DHHR system by computer and there is a strong push to have payroll (time sheets) done by computer. If this is the expectation why can these funds not be used to meet these expectations? It would be nice if person centered services included BMS policy writers recognizing that people with disabilities are full members of the community just like the folks who work for state government and provider agencies. The norms for behavior should be the same for all of us when it comes to communication tools like the internet.

512.15 MEMBER RIGHTS AND RESPONSIBILITIES

1. Page 33- list of rights – The right to be free of abuse, neglect and exploitation needs to be added to this list. There also needs to be a statement that they retain all of their civil rights unless they have been removed by a court of law, or WV Code, including their right to vote.

512.16 MEMBER GRIEVANCE PROCESS

1. Page 34–1st paragraph – This is written in a confusing manner. Whose grievance policy is APS explaining-each of the service providers the member is using or APS’s policy? If each provider has their own are they all different? What member grievance form are they given by APS? If they have multiple service providers is it one for each provider plus APS? Or is APS doing their policy and each provider does theirs themselves with the member?

512.17.1 Emergency Transfers –

1. Pg. 35 bottom and top of pg. 36 – Who submits the justifying documentation in the Personal Options setting if the PO member/representative is the abuser?

512.18 DISCONTINUATION OF SERVICES

1. Page 36 B.- unsafe environment - WVA is extremely concerned about this statement. Both statement 1) and 2) would present risk to the worker, but would place the member at even greater risk for neglect, abuse and mistreatment since they are in that setting 24 hours a day. If any person with a disability is living in an environment described under section B it MUST be reported immediately to Adult Protective Services and law enforcement if a crime is occurring. The thought of having a policy to protect staff from this treatment, but to leave the person with the disability to remain in the setting at risk for injury or death is simply not acceptable! IT IS A DISGRACE TO MAKE A STATEMENT THAT IF ANOTHER AGENCY WILL NOT ACCEPT THE MEMBER DUE TO UNSAFE CIRCUMSTANCES THE CASE WILL BE CLOSED. And do what? Ignore the risk the member is experiencing in that unsafe environment? We totally support a safe working environment, but the member has an absolute right to a safe living environment as well. Why would APS transfer services to another agency and allow more people’s life and safety to be placed at risk? It is the responsibility of DHHR to see the member’s safety is protected and this is a written statement that they are willing to ignore that responsibility and treat it as an administrative issue.

West Virginia Family Leadership First, a statewide group which supports and encourages families to speak for themselves and others, will hold their 18th annual Families Conference April 20–22, 2012 at Canaan Valley.

Some topics that will be offered at the conference will include:

• prescription drug abuse
• scream free parenting
• positive behavior support for challenging children
• bullying
• cooking on a shoestring
• first impressions
• IEPs
• Our Town
• wills and trusts
• Veterans issues
• ABCs of a healthy lifestyle
• home safety
• money management
• accessing local resources
• voting
• legislative 101
• nature walk

For the teens they are planning:

• say no to drugs
• bullying
• an art project
• communicating with parents
• teen leadership in the community
• teen parent issues
• IEPs
• siblings with a disability
• safe dating
• first impressions
• leadership in schools
• leadership in the community

Families who attend the conference are accepted from the applications received from all across the state. All meals, lodging, child care and conference materials are paid for and participants receive a gas stipend at the close of the event. The deadline to apply is February 28, 2012.

More information and the application (RTF) are available at http://www.familyleadershipfirstwv.org or by contacting Vanessa VanGilder at VKVanGilder@yahoo.com or (304) 421–0915.

Transition Planning from High School to Adulthood

• Have you and your school system started transition planning for life after high school for your 16-year-old?
• Does your student plan to further his or her education or enter the workforce?
• Will your adult child need assistance to live independently after high school?

West Virginia Advocates (WVA), the protection and advocacy agency for people with disabilities in West Virginia, is pleased to offer a free training that will include:

• Transition planning and the IEP
• Information and discussion about adult services available

Resource information packets will be provided.

If you require alternate formats of materials, please notify WVA by February 1, 2011.

• Are you the parent or guardian of a school-aged child with a disability who has or may need an IEP (Individualized Education Plan)?
• Does your employer require you to advocate for special education services within the school system?

West Virginia Advocates, the federally mandated protection and advocacy system for people with disabilities in West Virginia, is pleased to offer a free training on West Virginia Department of Education Policy 2419. Policy 2419 is WV’s regulations for services available to children with disabilities in the school system.

A copy of Policy 2419 and an Education Packet will be provided.

Wrightslaw Resources will be available for purchase at a discounted price.

If you need alternate formats of materials, please let WVA know by February 1, 2011.

Save a date on your calendars for the following trainings that WVA is planning to present during our Fiscal Year 2012 (October 2011 - September 2012).

Higher Education and Disability: Improved Federal Enforcement Needed to Better Protect Students' Rights to Testing Accommodations

TSA Announces Launch of TSA Cares Toll Free Helpline for Travelers with Disabilities and Medical Needs

The Temple University Collaborative on Community Inclusion for Individuals with Psychiatric Disabilities is seeking participants for a study. For details see the text below taken from their flyer:

Announcing - An Internet Parenting Education and Support Group for Mothers with Psychiatric Disabilities: A Research Study

The Temple University (TU) Collaborative has launched a new research study examining the effectiveness of an Internet parenting education and social support program for mothers with a psychiatric disability. The TU Collaborative on Community Inclusion is looking for women who are interested in participating in an online parental education course designed to enhance parental knowledge and skills in the following areas:

• illness management,
• child development,
• stress reduction,
• parent-child communication, and
• promoting resiliency in your child.

This program also involves Internet social support through a Listserv, which will be co-moderated by a parent with a psychiatric disability and a mental health professional. This group can connect you 24-hours a day, 7-days a week to a community of supportive peers, in your own home or anywhere you can access the Internet!

We are looking for people who:

• Are mothers (over the age of 18) diagnosed with a mental illness (Major Depression, Schizophrenia Spectrum Disorder or Mood Disorder)
• Currently have primary/ shared custody and are serving as the caretaker for at least one child (natural, adopted, or stepchild) under the age of 18
• Have access to a computer and the Internet
• Would consider using the Internet for support and information
• Are United States Residents
• Are fluent in English

Participants will be compensated up to $100 for their participation in this study.

If you want to participate or would like more information, please email us at the following address: momsupport@temple.edu

The Temple University Collaborative on Community Inclusion of Individuals with Psychiatric Disabilities

Renewing or gettng a new West Virginia Driver’s licences will require additional documents starting in 2012. For more information see http://www.wvgazette.com/News/Business/201112090171

Save The Date! - March 27 — 28, 2012

Sports Concussions: NOT Just a Bump on the Head!

The Brain Injury Association of West Virginia is pleased to announce a sports concussion conference. It will be March 27–28, 2012 at the Charleston Civic Center.

Great speakers, vendors and information!

Brain Injury Association of West Virginia
P.O. Box 574
Institute, WV 25112–0574
Phone: 304–400–4506
Fax: 304–205–7915
Email: mdavis@barinman.com or bpeterso@access.k12.wv.us

Sponsored by Warner Law Offices

US DOL Press Release: US Labor Department seeks to improve job opportunities for Americans with disabilities by setting historic hiring goal for federal contractors and subcontractors.

Full Test: 76 FR 77056 - Affirmative Action and Nondiscrimination Obligations of Contractors and Subcontractors Regarding Individuals With Disabilities

CMS has posted a video in American Sign Language explaining the Medicare Program.

Save the Date

April 20 - 22, 2011

18th Annual Family Leadership Conference

Canaan Valley Resort

For more information contact Vanessa VanGilder at vkvangilder@yahoo.com or (304) 421-0915

http://www.familyleadershipfirstwv.org

Save a date on your calendars for the following trainings that WVA is planning to present during our Fiscal Year 2012 (October 2011 - September 2012).

WVA has Wrightslaw products available for purchase at a reduced prices!

• "Legal Requirements of IEPs" CD-ROM (1.25 hours) - $11.22
• "Understanding Your Child's Test Scores" CD-ROM (1.5 hours) - $11.22
• "Law and Advocacy" CD-ROM (6.5 hours) - $37.46
• "Wrightslaw: All About IEPs" Book - $10.00

If you have questions about the products or would like to place an order over the phone, please call West Virginia Advocates at 1-800-950-5250 ext. 53.