Illinois Home Services Program Attempts to Cut Lifeline Services to Persons with Disabilities

Home-Care-WorkerAs an advocate concerned about the Home Services Program (HSP), I find capping IP services hours egregious! HSP, critically important to thousands of people with disabilities across the state of Illinois, ensures that everyday HSP customers receive care from their Individual Providers (IPs).
Capping the hours that IPs can work at 40 will mean that people with disabilities will not be able to access personal care assistance. In most places throughout Illinois, HSP consumers cannot find, hire and keep decent good IPs.
Parents, siblings and other relatives who act as IPs, with whom Illinois desires to cut work hours below 40 hours, jeopardizes financial and supportive IP, positive outcomes and quality of life. Until more effective policies emerge for persons with disabilities, this reduction of IP hours becomes cumbersome, undo-able and strict.
HSP customers and IPs deserve flexibility, not rigidity. Please eliminate the cap hours a week is too harsh and will put too many people’s lives at risk.
Photo from http://blog.abbeyspanier.com/wp-content/uploads/2012/08/Home-Care-Worker.jpg
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My testimony about the Department of Human Services (DHS) Proposed Changes on 08/26/15

082615 DHS Hearing

August 26, 2015

Ms. Tracie Drew, Bureau Chief
Bureau of Administrative Rules and Procedures
Department of Human Services
100 South Grand Avenue East
3rd Floor, Harris Building
Springfield IL 62762

Dear Ms. Drew:

Re:

Department of Human Services, Proposed Rules, 39 Illinois Register, pages 7301 est seq., May 29, 2015

As a Medicaid recipient of medical assistance and home services, I face a serious threat to my rights because the State of Illinois’ proposed hearing rules impose many overwhelming barriers for me to maintain my medical assistance benefits. I feel that the proposed rules would make it

difficult for me to appeal the Department of Human Services (DHS) decisions to terminate or deny my medical benefits, especially if I personally need to appeal a denial or termination of benefits.

Initially, I do not understand why

these proposed changes are necessary.

Secondly, because the hearing officer will impose the order of call of witnesses as she/he deems necessary, this two-hour hearing may be inadequate for me to fairly present my views in five minutes. I come here today to express my concerns.

Request for accommodation

To accommodate my disabilities, I request that DHS allow a 60-day appeal period, the historical time period, and that any delay caused by my medical condition may cause me medical and economic hardship. I suggest that a 30-days appeal period insufficient.

I request an accommodati

on for my disabilities that DHS offers me the option of an in-person hearing.

Benefits protection under federal law

The proposed rules are overwhelmingly complicated and confusing, and conflict with federal statutes and regulations that protect my eligibility rights for my Medicaid and Home Services benefits programs below noted.

Adequate notice

The proposed rules do not require adequate notices about termination or denial of my benefits. I suggest that DHS add language to the proposed rule to require a clear statement for the reason of its action. I suggest that the DHS does not delete the requirement that all written notices bear the same date as the date of their mailing and delivery.

DHS will not apprise me that I may request a hearing before a date of action (not the date of notice). I suggest that DHS gives me enough time to respond properly ‎to my notice. I suggest that it offers me a means to comment.

In the past, DHS sent me a notice of termination that did not allow me to respond to my resident agency service office in a timely manner, i.e., the respondent office was not

my assigned office. I did not have enough time to acquire the information requested. This made me spend 6½ hours travel and waiting time, and three office visits to submit my missing documentation. I needed to leave one office due to my long wait in an office with permeating fecal smell. After a two-hour wait, I had to leave to avoid vomiting. I returned to a fresher office the next morning. There were 250 people waiting before me, so I had to wait again. The condition of the two offices that I entered I found filthy, bug-infested, moldy and unhygienic. My visit to 5050 N. Broadway caused me to have an asthma attack.

With the proposed deletion of the word “adequate” in notices suggests that DHS thinks that notices can be something less than adequate, yet still be legally sufficient. If I receive a vague notice and think that it does not affect my benefits, I will lose my benefits. By the time I understand that DHS terminated my benefits, my appeal time and benefit payment pending appeal may have expired. I will again lose my needed medical benefits while I reapply and appeal.

Hearing judges

At a minimum, due process requires that hearing officers must be impartial. I suggest that the DHS include qualifications for hearing officers for all hearings, and specifically that hearing officers be licensed attorneys. An impartial hearing officer holds appeal hearings to determine fairly ‎the areas of agreement and disagreement. I strongly suggest that DHS replace the deletion of “unbiased” with “impartial” throughout the rules.

Free access to records

The proposed rules do not assure me free and timely access to my records for appeals. I suggest that DHS avail me of my full case record in the least burdensome manner.

I suggest that DHS not withhold my “confidential information” because that would restrict my review of my case record during an appeal process. DHS should not withhold anything in my case record for my review during the appeal process. Confidentiality is my choice, privilege, and not that of DHS.

Reasonable access to hearings

The proposed rules changed the hearing locations where I may not have reasonable access. I understand that long-term medical assistance, assigned to Chicago or Decatur, does not reimburse travel and associated costs. I could not afford to travel to Decatur.

The Bureau of Hearings (BOH) has the capability of taking appeals requests by telephone and has been doing so for many years. The proposed rules will not accept medical assistance appeals by telephone. This does not make any sense to me.

Due process

The proposed rules do not provide me with due process. I am entitled to administrative hearing procedures that have integrity and are fundamentally fair. The proposed rules require that only I may personally file a medical assistance appeal. I suggest that DHS permit my Power of Attorney agent, guardian or an authorized representative, and/or legal counsel to file appeals on my behalf. I suggest that the appeal form request attachment of my Power of Attorney document or other authorization form.

There is no rule requiring DHS to make the written appeal form readily accessible, although it requires acceptance of only written medical assistance appeals. There is no rule requiring the department to make the written appeal form readily accessible. Presently, I can only find the appeal form online and I do not always have Internet access. I suggest that DHS enclose a blank appeal form with any notice that initiates my appeal rights.

The proposed rules say that if I “improperly” request an appeal, then the BOH will advise me of the proper appeal process. I do not understand what this means. What is an “improper” appeal? Do I lose time to file my appeal? May I bring witnesses, pursue any argument without undue interference, submit evidence to establish all pertinent facts and circumstances, and question or refute any testimony or evidence, and include the opportunity to confront and cross-examine adverse witnesses?

I commend DHS for proposing to make an electronic recording of the hearing proceedings available to me at no cost and if such recording is not available, to make a transcript available to me at no cost.

Confusing deadlines

The proposed rules require that I provide evidence to DHS at least 3 days ( business?) days in advance of my medical assistance appeal or the hearing officer may not consider that information. This worries me because I have limited access to email, fax and/or scanned required documents. Will DHS provide me with free legal representation? What happens if my correspondence or records are lost?

The rules do not consistently specify identify deadlines; whether due dates are counted in calendar days, business or working days. I suggest that time be consistently stated throughout the rules.

Benefit payments pending appeal process

Presently, I understand that a provision exists that I am entitled to continued benefits pending appeal if I appeal in a timely manner. I cannot locate it in the proposed rules.

Burden of proof

The proposed rules require me to prove that DHS’s action is wrong, rather than requiring DHS to identify why the action is right. Because of the above-mentioned lack of reassurance for me to access to my records for the appeal, I could be unable to provide proof. This seems distinctly unfair to me. Since DHS has full access to my records located in various agency data stores, warehouses, databases, prisons, telephone records, emails and at different agency locations, I think that DHS is in a better position to provide the burden of proof.

If an attorney does not represent me, I do not have the wherewithal to defend my position within the network of governmental agency policies and procedures. Given my limitations and the inaccessibility of DHS staff, it is unfair to place the burden of proof on me.

Task-based services

Now that DHS moved to task-based staffing and special processing units, my accessibility problems have increased. With the task-based system, trying to talk to someone about my case in my DHS agency office requires me to recapitulate my entire DHS history at every encounter; affords me with little or no timely availability of my records; and, completely loses consistency of my issues with a different task worker every time. I need a caseworker to follow my case, not a task worker.

While task-based staffing and special processing units provide efficiencies for DHS, in the appeal context, it has the potential to overwhelm me and force me to abandon my meritorious appeal rather than try to navigate the system. I feel so discouraged.

In summary, these proposed rules will cause wrongful termination of my entitled benefits that will cause serious threats to my health and economic security. I implore you to review these proposed rules and their due-process violations, barriers, and uncertainties, through my eyes, as an at-risk citizen. Accordingly, I suggest that DHS withdraw the proposed amendments and refile them with adequate descriptions and reasons for every proposed change, addition and deletion in the rules.

Sincerely,

Kathleen A. Powers, A.A.S.
Northside Action for Justice, Member of the Board
The Alliance for Community Services, Steering Committee Member
Medicaid Recipient082615 DHS Proposed Changes Testimony

Ask a Casework – Event 2

Ask a Caseworker

My Testimony on 2/21/14 at Stean-Cassidy-Cassidy Town Hall

My name is Kathy Powers. I am on the Steering Committee of the Alliance for Community Services and on the Board of Northside Action for Justice. I live with bipolar illness since the age of 11. I thank goodness that I have Medicare and Medicaid.

I sincerely believe that the four-drug limit be abolished. I take 20 different medications a day. If I had to choose only four of drugs on my list, I would have to choose losing my kidneys, thyroid, gi tract, perennial rhinitis, chronic pain that goes along my five back fusions, liver, suffer parkinsonian symptoms, suffer movement disorder symptoms that involve me biting my mouth spasmodically, lose control of my diabetes and/or risk my psychiatric welfare. When the rules change for dual-eligibles (persons with Medicare and Medicaid benefits), the reality of a medication limitation looms closer every day.

When the well-intentioned prior authorization process was added, there was some hope to obtain sufficient medication. Unfortunately, the prior authorization process yielded unworkable results. Persons at my C4 drop-in center had their medications denied. The reasons for the denials included “denial because it is denied,” “denial because it was already approved.”The latter denial of medication caused my friend to cut herself from head to toe in total frustration and spend a lengthy hospital time to heal from her physical wounds while she received her needed medication. The authorization process is broken and dangerous.

When one takes medications as I do, this situation effects dental health. I have three teeth left on the bottom of my mouth and I’m missing four teeth on the top (show). This lack of teeth causes me to choke a great deal when I eat, makes it almost impossible to chew. I need dentures, at least on the bottom, so I will stop choking, but I can’t afford them and can’t find any assistance to get them. I’ve been known to choke on liquids and solids, and now I have an unnecessary risk for heart disease because of my poor dental health.

Since prescribed medications prevent medical emergencies, hospitalizations and lower doctor visits, I think Congress would be wise to consider the cost savings by removing the limit on medications allowed, just as an economic boost to the Medicaid economy. As far as dental health goes, I’m sure I’m not the only one who is at risk for cardiac disease or a choking emergency or death because of lack of dental care.

Thank you for your time.

Speech at Chicago Mental Health Rally on May 15, 2013 at the Thompson Center

Kathy Powers delivering speech

Good afternoon!

My name is Kathy Powers. I am here today with the Community Counseling Centers of Chicago (C4) and the Organization of the Northeast (ONE). C4 teaches me how to control my symptoms, and ONE feeds my soul by teaching me how to advocate for my community through actions and leadership training.

I am 62 and have lived with bipolar illness since I was 11. I spent years in hospitals in four separate states. Almost every day, I used to wake up with a sense of dread and hopelessness about life. Through the support of strangers with random acts of kindness, and some hard therapy and soul searching by me, I actually feel some happiness and know that I must share what I can to help others as they helped me.

The Mental Health Justice Group of ONE is a group of mental health consumers and allies in Uptown, Edgewater and Rogers Park. We fight to protect community mental health services and thereby improve the lives of our neighbors living with mental illness. At the state level, we complement our allies’ work, including the Mental Health Summit and the Behavioral Health Advocates.

The Governor’s 2014 state budget proposes a $25M increase in the Department of Mental Health (DMH) budget, mostly to comply with the Williams v. Quinn Consent Decree that orders the discontinuation of warehousing persons living with mental illness who recovered in nursing homes and reintegrate them into the community. Although we think that Williams needs full funding, this funding must not take away money from all other mental health funding.

I used to receive excellent care at the Northtown/Rogers Park Mental Health Clinic. Due to funding cuts to the city system, with no warning or referral services, I lost the opportunity to see a psychiatrist. Because of this, I could not get my medicine. After that, I went to an emergency room to get a prescription that lasted a month. Then I needed hospitalization when my meds ran out. I did well in the hospital when I received meds, but after discharge, I could not find a psychiatrist who would accept Medicare or Medicaid. Then the five Chicago clinics closed completely, leaving me med-less and therapy-less.

After my second hospitalization in a month, I began to receive minimal psychiatric services at C4. Through group therapy, I discovered that I was not alone in trying to receive services. How many here have similar stories? Give a shout!

If the state does not increase the budget to mental health, the cuts from previous years will remain inadequate to serve the needs for recovery services. It needs to reinvest in community mental health services and bring funding to the present levels that it cut in the past.

The Supportive Housing Budget at $28.5M assures me that I will continue to get appropriate housing. This lifts a tremendous burden from me about worrying that society will “disappear” me and chuck me in a hellhole facility forever if I relapse. I see the only redeeming factor of institutionalization as self-motivation to get out or die. How many of you or your loved ones are trying to escape now?

The cumulative savings from fewer hospitalizations, ER visits and institutionalization by funding community recovery treatment is effective and less costly than non-treatment. Cuts negatively affect the community and make services scarce, increase illness by inadequate services, and multiply stigma and ignorance about mental illness. Worst of all, inadequate recovery services impair persons living with mental illness from becoming contributing members of society. Like me, like you, like your loved ones!

Thank you.

Mental Health Supplemental Appropriation

The Division of Mental Health within the Illinois Department of Human Services determined that insufficient revenue in certain funds following passage of the FY13 budget existed. Mental health crisis programs and psychiatric services experienced unintended cuts of $12 million because of this revenue shortfall. The supplemental appropriation restored these cuts and prevented further cuts to the behavioral health services.

Across Illinois, supportive housing programs serving individuals and families experiencing homelessness and with disabilities wait for $2.986 million that lawmakers appropriated last spring and did not release because the appropriations bill mistakenly omitted the words “and mental health.” The Department of Human Services, therefore, did not have the authority to spend that money. The supplemental appropriation changed to language to, “The sum of $34,450,000, or so much thereof as may be necessary, is appropriated from the Health and Human Services Medicaid Trust Fund for awards and grants to developmental disabilities and mental health programs.” The language fix does not take funds away from other programs or services, but merely gives the Department of Human Services the authority to spend on supportive housing program.

Mental Health Summit(1) Concerns about the Four-Drug Limit in Public Act 97-0689, the “SMART Act”(2)

This is a summary of a recently issued Mental Health Summit paper. -Kap

Governor Quinn signed the “Save Medicaid Access and Resources Together (the “SMART” Act) into law on July 1, 2012 to reduce Medicaid spending.  The Act requires that any Medicaid beneficiary receive no more than four medications in any month without prior authorization from the Department of Healthcare and Family Services (DHFS). Consequently, serious concerns about harm occurring to people with mental illness include:

  • More than one psychotropic medication and others may be needed to manage side effects resulting from these medications.
  • Medications may be needed to treat co-occurring chronic illness, e.g., diabetes, hypertension, morbid obesity, hypothyroidism, movement disorders, etc.
  • Medications may be needed to treat non-psychiatric illnesses.
  • Closed mental health centers(3) and movement from nursing homes and other Institutions for Mental Disease (IMDs) to appropriate community housing mandated from lawsuits(4,5) place thousands of persons with serious mental illness into the community who need multiple medications. Restriction to medication access for persons with serious mental illnesses heightens health care costs by increased Emergency Room visits, inpatient hospitalizations and symptom recurrence.

The SMART Act provides additions to the four-drug limit with prior authorization (PA). Unfortunately, the PA system appears unfeasible because:

  • It is not equipped to handle all of the 200,000+ persons with serious mental illness who already take more than four prescription medications.
  • An electronic PA system is not in place to make authorization manageable for physicians to use. Doctors might hesitate to go through the time and expense to negotiate PA to serve their poor Medicaid patients.
  • Illinois has no published standards for PA, further discouraging physician participation.
  • As an interim measure, DHFS made a decision to initiate a temporary ten-drug limit, however, 72,000 Medicaid recipients already exceed this ten-drug limit.

Accordingly, the drug-limit restriction is fiscally unsound and BAD MEDICINE! A dialogue with legislative leaders, DHFS and the community about some prospective changes may avert an impending health care disaster:

  1. Permanently eliminate the four-drug limit.
  2. Amend the SMART Act to exempt the four-drug limit for disabled Medicaid recipients.
  3. Amend the SMART Act to exempt psychotropic medications for disabled Medicaid recipients.
  4. Improve the PA system by creating a viable, transparent PA submissions process with published standards and procedures.

________________________________

(1)    Mental Health Summit, 6020 S. University Ave., Chicago, IL 60637,
http://www.law.uchicago.edu/clinics/mandel/mental/summit.

(2)   Senate Bill 2840.

(3)   Tinley Park and Singer Mental Centers.

(4)   Williams v. Quinn – Successful class action lawsuit sought community-living alternatives for residents with mental illnesses in Illinois ordered on September 29, 2010.

(5)    Colbert v Quinn – Successful class action lawsuit sought Medicaid-eligible nursing home residents in Cook County with the array of supports and services that they need in the most  integrated settings appropriate to their needs ordered on December 20, 2011.

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