OPA: PATBI - Booklet

Putting the Pieces Together

{A graphic of four robots fitting four puzzle pieces together}

A Guide to Brain Injury Services in Connecticut

 

{Three MRI scans of a human brain.}

 

What is Traumatic Brain Injury?

A traumatic brain injury (TBI) is a blow, jolt, or penetrating head injury that disrupts normal brain function.  Due to the complexity of the human brain, each TBI is different.  While some effects of TBI may manifest immediately, others are not so readily apparent.  The long term effects of TBI can include: cognitive, emotional, sensory, and motor impairments.  A study conducted by the Centers for Disease Control reported that approximately 40% of individuals hospitalized with a TBI have at least one unmet need for services one year after the injury occurred.  According to the Brain Injury Association of America (BIAA):

 

§  Every 23 seconds, one person living in the United States

      of America will sustain a brain injury;

§  5.3 million individuals currently live in the United States with

      disabilities resulting from TBI;

§  1.4 million new brain injuries occur in the United States each year.

 

What causes Traumatic Brain Injury?

There are numerous causes of TBI in the United States.  Some of the most common according to the Centers for Disease Control (CDC) a {Graphic of man falling on backside} re:

§  Falls (35%);

§  Motor vehicle accidents (17%);

§  Head struck by or against

§  something (i.e. sports related  injuries,

      falling\debris, etc.) (17%);

§  Assault (10%). 

 

Who is at greatest risk for TBI?

According to the Centers for Disease Control:

  • The two age groups with the highest risk for sustaining a TBI are children from 0-4 years old, and adolescents from 15-19 years old;  {baby crawling}

  • Males are approximately 1.5 times more likely than females to sustain a TBI;

  • African-Americans have the highest death rate from TBI;  {Graphic of a service man.}

  • Military duties increase the risk of sustaining a TBI.  Blasts are a leading cause of TBI for active military personnel in war zones.

What are the symptoms of TBI?

Due to the complexities of the human brain, the effects of traumatic brain injury are different for each person.  Some of the more common symptoms can include:

  • Headache 
  • Memory problems
  • Inability to concentrate {Person rubbing their head because it hurts.}
  • Slowed thoughts, actions, or speech
  • Fatigue
  • Blurred Vision
  • Ringing in the ears
  • Mood changes
  • Balance problems

What is the Acquired Brain Injury (ABI) waiver?

The ABI waiver is a program administered by Connecticut’s Department of Social Services (DSS) and funded under a Medicaid Home and Community Based Services waiver.  The ABI waiver program provides a range of non-medical, home and community based services to eligible individuals with an Acquired Brain Injury who would otherwise require placement in an institutional setting.

 

To be eligible for the ABI waiver individuals must meet the following requirements:

 

·        Must be an individual with an ABI not associated with a

     developmental or degenerative disorder;

§  Between the ages of 18-64;

§  Who meet the DSS “Level of Care” requirement which states that 

      without waiver services the individual would require care in:

                {Graphic of a patient in a hospital.}         ~ a nursing facility

   ~ an ABI nursing facility

   ~ a chronic disease hospital

 ~ an intermediate care facility for persons with

     intellectual disabilities;

§  Be able to actively participate in the program whether or not they have a conservator;

§  Must meet all the requirements of the DSS administered Medicaid

      program, including:

        ~   a gross income not to exceed $2022/month; and

        ~   countable assets not to exceed $1600 for a single adult,

             although certain protections and exceptions may apply. 

Individuals may also meet the financial eligibility rules for the waiver if they qualify for Medicaid through the MED-Connect. Under that program working individuals can have income up to $75,000 per year, and up to $10,000 in assets.  If an individual’s gross income exceeds 200% of the federal poverty level, he or she will be required to contribute to the cost of services rendered under the waiver.

 

{Graphic of a dollar sign} What are the limits of the ABI waiver? 

The ABI waiver program is not an entitlement program, does not provide housing, and services may be limited based on available funding and program quotas.  The program has “aggregate” and “individual” caps on service expenditures.  

    §  The individual cap requires that the total cost of an individual’s service plan cannot exceed 200% of the state’s projected expenditure if the individual was placed or remained in institutional care.

§  The aggregate cap ensures that at any given time, the total cost of services for all participants cannot exceed 75% of the state’s projected expenditures if all individuals in the program had received institutional care.

 

What services are available under the ABI waiver?

There are 19 services available under the ABI waiver.  Some services may not be accessed in conjunction with other services. These services are:

§  Case Management - assistance to the individual in implementing and coordinating all sources of support and services to the waiver participant.

§  Chore Services - services needed to maintain the participant’s home in a sanitary and safe condition.

§  Cognitive/Behavioral Programs - individualized programs to decrease severe maladaptive behaviors that would jeopardize the participant’s ability to remain in the community.

§  Community Living Support Services - supervised living in a {Graphic of a medication bottle.} community residential setting which provides up to 24 hour support services.  Services may include medication management, self care, and interpersonal skills.

§  Companion Services - non-medical care, supervision, and socialization services that have a therapeutic goal as noted in the participant’s service plan.

§  Environmental Accessibility Adaptations - physical adaptations to the participant’s home to ensure the participant’s health and safety, and to promote independence.  Examples of adaptations include but are not limited to ramp installation, bathroom modifications, and doorway widening.

§  Family Training - training and counseling for individuals who live with or provide care to the waiver participant.

§  Habilitation - services provided outside the participant’s home, to assist the participant with obtaining or enhancing adaptive, socialization, and self help skills to live successfully in the community.

§  Pre-Vocational Services - services designed to prepare the participant for employment when the participant is not expected to be able to work or participate in a transitional work program within 1 year.

§  Supported Employment Services - paid employment with intensive supports provided in a variety of settings for participants unlikely to secure competitive employment.

§  Homemaker Services - general household activities such as meal {Graphic of ironing board} preparation, laundry, and vacuuming.

§  Home Delivered Meals - meals delivered to the participant when the person responsible is unable to do so.

§  Independent Living Skills Training - services designed and delivered on an   independent or a group basis to improve the participant’s ability to live independently in the community.  Services may include training in self care, medication management and mobility.

§  Personal Care Assistance - assistance with activities of daily living.  These services may be provided by a family member of the participant if they meet the training requirements established by the Department of Social Services.

§  Personal Emergency Response Systems - electronic devices that enable individuals at a high risk for institutionalization to obtain  help in an emergency.

§  Respite Care - to provide short-term assistance to the participant if a caretaker is absent or in need of relief.

§  Specialized Medical Equipment and Supplies -specified in the participant’s service plan that will enable the individual to perform activities of daily living.

§  Substance Abuse Programs - interventions to reduce or eliminate the use of  alcohol or drugs by the participant.

§  Transitional Living Services - individualized, short-term, residential services providing up to 24 hour support.  These services are provided only once in the participant’s lifetime.

§  Transportation - mobility services offered after exhaustion of all {Accessible van} other resources.

§  Vehicle Modification Services  - alterations made to the  vehicle that is the participant’s  primary mode of transportation to avoid institutionalization.

 

Now that I know the basics, what steps do I need to take?

1)   Contact the Department of Social Services (DSS) and ask for an ABI Waiver application.  If you are unable to complete the application yourself,  you can have a friend or family member assist you.  You can also request that DSS staff assist you with the application as a reasonable accommodation to your disability.  Take the time to review your application with a person you trust and who knows you well, before you submit it to DSS. 

2)    If you do not have a recent neuropsychological evaluation, you will need to obtain one.  If you do not currently have a neuropsychologist, there are resources that may be able to assist you.   These include:

§   Allied Community Resources at (877) 722-8833.  Tell them that you are looking for a neurpsychological evaluation to determine your eligibility for the ABI Waiver.

§  The Brain Injury Association of CT (BIAC) at 1-800-278-8242.  Ask for a referral to a neuropsychologist in your area.

§   You can directly contact one of the larger providers in the state, or a private provider of your choosing.  Verify in advance that they accept your insurance, or if you prefer to private pay, reach a fee agreement with them before accepting any services.  Some of the larger facilities are:

~ The Hospital for Special Care in New Britain. (860) 223-2761;

~ Gaylord Hospital in Wallingford. 1 (866) 429-5673;

~ Mt. Sinai Rehabilitation Hospital in Hartford. (860) 714-3500.

3)   When completing the application process you will need to disclose your “level of care requirements”.  This means you must be able to show DSS that you need assistance with activities of daily living.   This can be either physical assistance or cuing and supervision to complete necessary tasks.  Examples of activities of daily living include bathing, dressing, and eating.

I have been accepted into the ABI Waiver Program, but there is a wait list, now what?

Congratulations, you have received a letter of acceptance from the Department of Social Services.  Your services may begin quickly, or there may be a delay due to a waiting list for services.  As the ABI Waiver is not an entitlement program, when demand for services is greater than the waiver’s capacity to provide them, a waiting list forms.  Try not to be discouraged, the waiting list does move.  The sooner you get on the list, the sooner services can begin.  Periodically check in with your DSS social worker, at your local DSS office, for information on your current placement on the list. 

 

How are services coordinated under the ABI Waiver?

The Department of Social Services social worker will work with the individual with the brain injury, and the individual’s interdisciplinary person-centered team to develop a Service Plan.  The team consists of the individual with the brain injury, who is the essential person in developing his/her service plan, the individual’s conservator if applicable, a neuropsychologist familiar with the individual, service providers, and any other person(s) chosen by the individual.  The Service Plan will contain an individualized selection of services, which will enable the individual to live in the community.  The Service Plan must contain goals for increased independence, and measurable objectives to assess progress.  The individual’s level of care and Service Plan are reviewed at least once per year, and may be revised as necessary.  Individuals in the ABI waiver program are given a choice of all qualified providers of each service specified in the Service Plan.  They also have the right to change providers if they are dissatisfied with services.  Providers of ABI services must meet DSS qualification standards and be listed in the DSS ABI Provider Registry maintained by Allied Community Resources, Inc.

 

What are some tips for getting what I need and want from ABI Waiver services?

First, remember that you are the most important person on your ABI Waiver team.  Your team has a responsibility to ensure that you have a voice in your service planning and that you are able to participate in the process.  ABI Waiver team meetings can seem intimidating, a table full of professionals and experts discussing you and your life.  There are some things that you can do to make meetings less intimidating, and ensure that you have access to all the information.  These are:

§  Bring someone to meetings with you.  This can be a friend, family member, or an advocate, of your choosing.

§  Tape record the meeting.

§  Request a copy of the meeting minutes in writing.

§  Request a break when you need one.

§  Receive a copy of your Service Plan. 

 

How can I advocate for myself?

 

Steps in Self-Advocacy

 

1.  Clearly define the problem and identify possible satisfactory solutions.

          a. What is it that you need/want?

          b. How can that need/want be fulfilled?

2.  Prepare to the best of your ability.

         a. Learn and understand the system. 

 b. Know your rights and your responsibilities

     within the system. 

 c. Read the law and be sure that the solution

    you are seeking is within the ability of the

    agency or person to grant it.

3.  Keep a written record. 

a.  Write down basic information for every contact; with whom you spoke, when, and what was said.

b.  Ask for responses in writing.  If this is not possible, write a letter to the person with whom you spoke, summarizing the information that you discussed.

c.  Keep copies of all documents including, correspondence, receipts, forms  and documents you have signed, related to your issue.

Start at the lower level of the decision making chain.

Move upwards to higher positions of authority as necessary.  If you do not get the resolution you are seeking, ask how to appeal that decision, and with whom.

5.  Use the appeal process.

Be sure to adhere to specified timelines and constraints.  Appeals should be directed to the DSS Office of Legal Counsel, Regulations and Administrative Hearings, 25 Sigourney Street, Hartford CT 06106.  (860) 424-5760.

6.  Prepare to use outside pressure, if necessary.  Remember to do so in a cautiously and conscientiously.

7.  If you “lose” your fight, “win” by learning how to advocate better.

      a. Always have a backup plan.

      b. Try to be flexible in the solutions you will accept.

Tips for Self-Advocacy

1.    Be assertive, never aggressive.  Be polite and calm, but firm.

2.    Question anything, and everything you do not understand. Knowledge is power.

3.    Maintain your focus.  Use strategies that help you stick to the issue of concern, such as writing down your goals and bringing a list of questions to your meetings.

4.    Keep copies of ALL important documents including letters, court papers, and anything you have signed.  Know your limits of negotiation.  What points are you willing to compromise on?  How much compromise is acceptable to you?

5.    Write down everything.  Take notes of phone calls, meetings, etc., and note the date, with whom you spoke, what was discussed, and what the outcome was.

6.    Get responses in writing.  Ask for decisions and important information in writing.  If that is not possible, write a letter of your own understanding of a discussion or decision.  Set a timeline for the agency or person to respond to you.

7.    Recognize your own hard work and a job well done!  

 

What can I do if I am denied the ABI waiver, its services, or my right to make choices?

Although the ABI waiver is not an entitlement program, there is a formal Fair Hearing Process. 

An individual may request a formal hearing if:

§  The Department of Social Services did not offer an individual with a acquired brain injury the choice of home and community based services as an alternative to their present living situation residing in either a nursing facility, an ABI nursing facility, a chronic disease hospital, or an intermediate care facility for persons with intellectual disability;

§  DSS does not determine financial eligibility within “the standard of promptness” of 45 calendar days;

§  DSS denies the application for any reason other than limitations on the number of participants who can be served, or funding limitations;

§  DSS disapproves the participant’s Service Plan;

§  DSS denies or terminates a service the individual has chosen;

§  DSS denies or terminates payment to the qualified provider of the participant’s choice;

§  DSS discharges the participant from the waiver program.

 

Where can I obtain additional information and assistance?

The Connecticut Office of Protection and Advocacy for Persons with Disabilities operates the PATBI (Protection and Advocacy for Persons with Traumatic Brain Injury) program in Connecticut through a federal grant from the United States Department of Health and Human Services.  The PATBI program provides FREE individualized advocacy assistance to individuals with TBI.  You can connect with the PATBI program in one of the following ways:

 

  • Call the Office of Protection and Advocacy for Persons with Disabilities at (860) 297-4300 (Voice), (860) 297-4380 (TTY), or toll free CT only at 1-800-842-7303 (V/TTY).
  • Fax the Office of Protection and Advocacy for Persons with Disabilities at (860) 566-8714.
  • E-mail the Office of Protections and Advocacy for Persons with Disabilities at OPA-Information@ct.gov

For additional information on OPA programs, services, and publications please visit the OPA website at: www.ct.gov/opapd

Helpful Resources for Individuals with Traumatic Brain Injury (TBI) in Connecticut

The Office of Protection and Advocacy

 for Persons with Disabilities (P&A)

Offers: Free advocacy assistance, information, and resources to individuals with TBI and their families.

(860) 297-4300 (Voice)

(860) 297-4380 (TTY)

1-800-842-7303 (toll-free CT only) (Voice/TTY)

website: www.ct.gov/opapd

 

Brain Injury Association of CT (BIAC)

Offers: free information, resources, and access to a statewide support group network.

(860) 219-0291

1-800-278-8242 (Voice/Relay)

website: www.biact.org

Department of Social Services (DSS)

Administers the Acquired Brain Injury (ABI) waiver, which provides necessary community based supports, i.e., personal care assistants, case management, and independent skills training.

1-800-842-1508 (Voice)

1-800-842-4524 (TTY)

website: www.ct.gov/dss

The Bureau of Rehabilitative Services (BRS)

Assists individuals to prepare for, obtain, and maintain employment. 

     (860) 424-4844 (Voice)

     1-800-537-2549 (Voice)

     (860) 424-4839 (TTY)

     website: www.ct.gov/brs

Statewide Legal Services

Provides free civil legal services to individuals who meet certain income guidelines.

1-800-453-3320 (Voice/TTY)

intake hours:

9am-3pm-Mon. and Wed.

9am-4pm-Tue., Thur. and Fri.

website:  www.slsct.org

The Independent Living Centers

Consumer-controlled centers that provide services to assist and support

individuals with disabilities in achieving and maintaining maximum

 independence in their communities.  Services include the assistive

technology loan program, and the nursing home transition program.

For information on the five independent living centers in

CT please call BRS at:

1-800-537-2549 (voice)

(860) 424-4839 (TTY)

 

The New England Assistive Technology Center (NEAT)

Provides information, client needs evaluations, demonstrations, and restoration

of assistive technology devices.

1-866-526-4492 (Voice)

(860) 286-3113 (TTY)

website: www.neatmarketplace.org  

Easter Seals of Connecticut

Provides rehabilitation services to individuals with disabilities.  Services include: medical rehabilitation, vocational assistance, and recreational programs.

1-800-874-7687 (Voice/ TTY)

website:  www.easterseals.com  

The Corporation for Independent Living

Provides assistance and limited funding for home and vehicle modifications for individuals with disabilities.

(860) 563-6011 (Voice/Relay)

website:  www.cilhomes.org

Social Security Administration (SSA)

Administers federal financial disability benefits programs.

1-800-772-1213 (Voice)

1-800-325-0778 (TTY)

website:  www.ssa.gov

 

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Content Last Modified on 1/11/2016 3:55:54 PM