As caregivers Advocacy is our job. We are the experts. We are their voice. We are the consumer. (See Urgent Action Page.)
Lobbying for Lemonade...or change, whichever you prefer.
Our mental health system is broken and needs to be fixed. I've spent 40+yrs of my life observing both the flaws and the opportunities of our mental health system and its consumers. Today I want to be the voice our loved ones don't have.
In late 2011 I was thrown back into the maze of the mental health system and insurance industry through a crisis with my loved one. I left with a commitment to not only advocate for change but help fix this broken system. The decline in the quality and access to care from 2005 to 2011 was palpable. While at the same time the daily and weekly struggles for my loved one over those same six years had grown worse due to the economy. Jobs, homeownership, programs and support services were all disappearing. The ever increasing financial and emotional burden being put on my family.
I'll add posts, links and advocacy opportunities nearly daily here. The information you'll find will be current and relevant to me a caregiver or the MI industry as a whole. My hope is to be a stop in your day to add some hope to your heart.
I don't hem and haw much over frivolous matters. I prefer to be proactive and help those who need it. A fast laugh and quick smile are the way to my heart. I live a light life with my family and enjoy the calm because one thing I know is that the tragic storm will come and rarely when expected.
How to Effectively Lobby
The most important step is the first one. Write and email a letter. Keep it simple. State your concerns and your experience. Be honest and open. Follow-up. Be kind and ask for support.
Tips from the League of Women Voters: http://www.lwvwa.org/pdfs/lobby_your_legislator.pdf
Lobbying Basics from CT Association of Non-Profits: http://www.ctnonprofits.org/policy/resources/basics
Testimony: CT State Legislature
Sandy Hook Hearings on Mental Health Services 1.29.13
I’m a Mental Health Advocate & lifelong caregiver of a mentally ill loved one. I represent caregivers and my business Turtles & Lemonade.
Thank you for holding this hearing and listening to our voices. I feel the voice of the caregiver is the most important one to have at the table when discussing access, the successes and failures of Mental Health Services. We navigate the public, private and insurance system year-in-and-year-out.
I ask you to look at the bottom line issues & the true costs of offering parity in Mental Health Services, parity certainly isn’t easy to define. The numbers speak for themselves: Connecticut lost between $31-17 billion dollars in income tax revenue from caregivers over the last 15 years. Over this same time period insurance companies have steadily reduced coverage for Mental Health Services, have posted unprecedented profits and health insurance premiums have increased 131% in the last decade. The insurance company practice of having administrators not doctors recommend what is best for our loved ones is unacceptable. This practice reduces their costs, while reducing Connecticut tax revenue and my personal income.
As a caregiver I’ve had to fight for covered hospitalizations, secure exceptions for services denied my loved one, research and find ways to access public services to add to the sparse services and therapy available for my insured loved one, pay copays and bus fares while building my loved one up who is unable to advocate and speak for herself while trying to work, take care of my family and volunteer.
We need a zip-line to services when someone with chronic mental illness reaches out. Neither the private nor the public system can expect a person with chronic mental illness to properly fill out disability insurance paperwork, advocate and be tenacious enough to break through a cumbersome system in order to access covered or available services.
Information on services and support need to be advertised and publicized to caregivers more so than the chronically mentally ill. As an informed consumer until I came out of the closet as a caregiver I too had little information on many of the valuable support services available for my loved one.
I urge you read the Connecticut Office of the Health Advocates January 5th, 2013 report & the Blue Ribbon Commission report of 2003. These reports were very difficult for me to read as the obstacles and problems I live and navigate daily were clearly spelled out 10 yrs. ago and have cost Connecticut and my family quite a bit.
Please look at the true costs to properly insure Mental Health Services. Examine the real costs to our State when care for our mentally ill loved ones is pushed onto non-professional caregivers. Providing proper mental healthcare coverage will decrease not increase insurance costs, reducing overall health care cost to all. Providing proper coverage will reduce the need and associated costs of emergency hospitalizations whose costs are often passed onto the state through Medicaid reimbursement or to our hospital systems who can’t recoup these costs.
The bottom line to the State in lost income tax revenue is real. We need to look at not only the $31-17 billion dollar loss to our State but the cost to our Nation. Nationwide the cost of lost wages, pension contributions and Social Security taxes over the same time period with respect to caregivers is 3 TRILLION dollars. (Per MetLife study.)
Thank you and your commission for holding this hearing. I urge you to stay the course, reach out and help us move an inch in the right direction for our loved ones.
Legislators, caregivers, mental health professionals and insurance companies need to come together and fix this economic problem.
(Edited from Letter sent by FFLD & CT NAMI.)
HEARING Friday February 15th, 2013
The Governor’s budget has proposed cuts to eliminate funding for research and eliminate funding for new and expanded School-based Health Centers is disastrous. While Bill #169 is being proposed to have each child screened in school.
With such high unemployment, expensive and ineffective private insurance families rely on school-based health centers MORE & MORE to meet their needs for a full range of age-appropriate health care services, typically including: Primary medical care, Mental/behavioral health care, Dental/oral health care, Health education and promotion, Substance abuse counseling, Case management, Nutrition education
Hearing after hearing this year has stressed the need for early identification of mental health issues and while more and more families are being denied services by insurance companies or have to deal with waiting lists or reduced hours by service providers, school-based health centers provide the answer for early identification and intervention and treatment. THIS MAKES NO SENSE based on the facts, the hearing testimony by professionals. . • CT Mental Health Center: Governor’s budget includes proposal to Eliminate funding for research.
“If only they knew more about my loved one’s illness?” Why aren’t they listening!
PLEASE make your voice heard. PLEASE pass on this email.
There are going to be a lot of important issues coming down the pike this year thanks to the increased awareness of the flaws in our mental health system. NOW IS OUR CHANCE TO BE HEARD!
The co-chairs of the Appropriations Committee are Senator Toni Harp and Representative Toni Walker.
(Letter from) Keep The Promise Coalition and NAMI Connecticut Members and Advocates.
Below is a summary of the major items in the Governor’s budget proposal related to the DMHAS and DPH budgets. Please consider testifying or submitting testimony to support programs that are important to people living with mental illness in Connecticut. The Governor’s budget includes proposals to decrease funding to the below programs. Please consider testifying IN OPPOSITION to the below cuts and emphasize why these programs are vital to the mental health community: • Legal Services: Governor’s budget includes proposal to Reduce funding; over $280,000 each Fiscal Year, 2014 and 2015 • School-Based Health Centers (SBHCs): Governor’s budget includes proposal to Eliminate funding for twenty-two new or expanded School Based Health Centers; over $2.7 million each Fiscal Year, 2014 and 2015 and for which funds were originally appropriated in Fiscal Year 2013. Comprehensive School Based Health Centers provide both primary and mental health care on school grounds, making services accessible at low cost bolstering early identification of physical and mental health issues. • CT Mental Health Center: Governor’s budget includes proposal to Eliminate funding for research • Rescission and Deficit mitigation cuts: Governor’s budget includes proposal to Annualize these cuts, making them permanent The governor’s budget includes funding increases to the below programs. In your testimony, we urge you to thank the governor and remind the legislators of the importance of increasing funding to the following programs.
We SUPPORT: • Young Adult Services (YAS): Increased funding • Acquired/Traumatic Brain Injury placements: Increased funding • Discharge Fund for patients at CT Valley Hospital: Increased funding • Supportive Housing: Governor Malloy’s Housing Initiative includes investments in Supportive Housing. It authorizes $20 million to develop 100 new units of supportive housing with an annualized $1 million for rental assistance subsidies and $1 million for services. Supportive housing is a successful and cost-effective approach to addressing homelessness by creating permanent affordable housing with services. • Health Homes: New funding for Health Home Initiative which is designed to better coordinate behavioral and physical healthcare for clients served by DMHAS. This new funding ($10 million), combined with in-kind support of state operated and privately provided services, will result in $50 million in additional revenue over the biennium due to a 90% federal match available under the Affordable Care Act. • Home and Community Based Services (HCBS): Increased funding • Private non-profit providers: annualized 1% Cost of Living Adjustment (COLA); establishment of $40 million bond funding For hearing details, please see the following instructions: The co-chairs of the Appropriations Committee are Senator Toni Harp and Representative Toni Walker. Public speaker order for the public hearing will be determined by a lottery system. Lottery numbers will be drawn from 9:00 AM until 10:00 AM in the LOB First Floor Atrium and from 10:15 AM until 1:00 PM in Room 2700. The list of speakers registered through the lottery system will be posted outside the designated hearing room (Room 2C) two hours prior to the start of the public hearing. Speakers arriving after the completion of the lottery will have their names placed at the end of the speaker list. On February 15 the Committee will provide a separate sign-up sheet for persons with special needs. Those speakers will be registered on a first-come, first-served basis. The Committee Chairs will alternate between the special needs list and the standard list until the special needs list has been exhausted. Speakers will be limited to 3 minutes of testimony. Please submit 25 copies of written testimony at the time of sign-up. Testimony delivered after the start of a hearing may not be distributed until the following day. The Committee will accept electronic testimony via email at appropriationtestimo@cga.ct.gov for posting on the Committee’s website and inclusion in the hearing transcript. All public hearing testimony, written & spoken, is public information. As such, it will be made available on the CGA website and will be indexed by Internet search engines. For the February 15 public hearing, Room 2D will be reserved for individuals with special needs who need a quiet space while waiting to testify. The co-chairs of the Appropriations Committee are Senator Toni Harp and Representative Toni Walker. if you are unable to testify, your voice can still be heard by writing letters/emails to your legislators. Thank you for your invaluable advocacy efforts and we hope to see many of you this Friday!
Testimony: CT State Legislature
Opposition to the Implementation of Step Therapy, under the Pharmacy
Program. (edited)
The chronically mentally ill cycle in and out of our mental health care system for a variety of reasons: the complexity of the brain; stopping meds; rejection of treatment; inability to pay for services or find services; insurance companies changing RXs and now possibly the state sanctioning this very dangerous and expensive practice.
Generics and Name Brand RX’s aren’t the same, that is a known fact. Their delivery system, binders and manufacture are different. Patients, families and society pay a dear price when insurance company switch meds to a generic without a doctors nor a patient’s consent.
Case Study:
After over 40years of suffering and nearly 20yrs in and out of treatment a patient accepted her diagnosis. Her caregiver knew the warning signs of the deterioration in the delicate balance to the mental state of her loved one.
The warning signs began to appear; lack of sleep; racing mind; drastic diet change back to junk food (self-medication); inability to clearly articulate a thought, etc. The patient was happily working, around a very supportive group of people; was in therapy, following her plan and on her meds.
The caregiver had to fight her loved ones insurance company to get her into the hospital for a med check, convince her to go and to sign herself in. The caregiver and the patient’s lives stop in order to deal with the crisis. The caregiver had to get a medical proxy to get her loved one into the hospital once the patient agreed to go. The insurance company didn’t want to cover this. The patient lost four months of her productive life. Her hospitalization cost her her job; she’s been unemployed ever since. A @$22.00 savings to the insurance company has now costs the state, herself and her family how many tens of thousands of dollars? All because an administrator at her insurance changed her medication to a generic company not a licensed physician, not her Doctor.
The state has no business playing with my loved ones brain and life and neither do insurance companies. Insurance premiums go up, these companies post record profits while cutting services that are ‘covered’. I go to Doctors for medical advise, not an insurance company and not my legislators.
It’s bad enough that I have to fight my loved ones private insurance company for care, do I need to add the state to this battle to? I will if I have to, because I have a loved one who depends on me and can’t fight for herself.
There is no end to our states legal culpability if you legislate my loved ones medical care.
My name is (omitted), I’m a caregiver and I’m not going away.
(Please use your voice.)
Testimony: CT State Legislature 3.5.2013
Human Services Committee
S.B. Bill 1023 Revenue Retention for Non-Profits/S.B. Bill 1026 Adequate Provider Networks
Good Afternoon Senator Slossberg, Representative Abercrombie, and members of the Human Services Committee.
I’m testifying today in support of Bills 1023 and 1026.
Bill 1023: Non-profits are vitally important to our mental health care system in Connecticut. When closing our state run mental health hospitals in the 1990’s the Legislature did so stating that non-profits in our state were better equipped to handle this demographic and with a promise of funding. This funding is vitally important to their ability to operate.
Our non-profits operate on a shoestring and offer desperately needed support services to our loved ones who suffer from mental illness. As long as Non-Profits comply with our state regulations and reporting please allow them to retain any extra funds, they will be put to good use.
Bill 1026: Due to budget cuts Bridgeport Mental Health has gone from offering counseling to low income families from five to two days a week. As a result there are now waiting lists. This is neither adequate nor acceptable mental health care. Having children and families wait 6 weeks between appointments is unacceptable under any successful mental health care model.
We need to have acceptable and accessible mental health services that are properly funded. The Legislature is looking at Bill 374 this week which will legislate the screening of each child in our public school system, therefore identifying more children and families in need—with no place to go. That is not a model for success.
Throughout this Legislative session our state psychiatric and mental health professionals, service providers and caregiving families have testified to the dire need of more mental health professionals in our state, better reimbursement and easier access. Thank you for your continued funding and support of mental health services in CT.
Testimony: CT State Legislature
An act concerning the insurance department’s duties, mental health parity compliance checks and the external review application process. (edited)
Program Review & Investigations Committee H.B. No. 6517 (3.7.13)
As caregivers we navigate the public, private and insurance mental health systems year-in-and-year-out.
I’m here today to speak in support of Bill 6517.
The chronically mentally ill cycle in and out of our mental health care system for a variety of reasons all known to the insurance industry and all used to their advantage: the complexity of the brain; stopping meds; rejection of treatment; inability to pay for services or find services; insurance companies changing RXs.
(story)
What caused this crisis? Step Therapy, an administrator at her insurance company changed her medication to a generic from a brand name. The change was not by a licensed physician, not her Doctor. Remember her insurance company denied her the needed emergency care, which became necessary due to their decision that put her in crisis, she paid a dear price. What was the real dollar savings to the insurance company for the med change?
Would this have happened if insurance companies knew there was oversight like there are for non-profits that provide mental health services in our state or for our elderly? I think we know the answer to that.
The true costs of providing proper mental health care coverage will decrease not increase insurance costs, reducing overall health care cost to all. Providing proper coverage will also reduce the need and associated costs of emergency hospitalizations.
Enforce the insurance parity laws currently in place. Begin true oversight, which I’m so grateful that you’re proposing here today. Add substantial penalties and no loopholes. Caregivers need to be able to trigger these penalties for our loved ones who are unable to for themselves. If you chose to do nothing you need be content with the insurance companies wish for these services to ONLY be offered by the government. Yet, remember that puts the burden for healthcare, support, housing, food, unemployment and SSI on to you.
We need your commission’s oversight to put insurance companies on notice that you’re watching. We need a place to go to report on insurance companies with respect to behavior health services covered and denied. Insurance companies have benefitted by the inability of those who suffer from chronic mental illness to properly fill out insurance paperwork, advocate and be tenacious enough to break through their cumbersome system in order to access covered or available services and HIPPA laws which prevent caregivers from helping them.
We pay our insurance premiums expecting to get what we pay for, yet rarely do when it comes to behavioral health. Yet, if we don’t pay our premium we don’t get covered care. Why are insurance companies not providing covered care still allowed to be serving the public that PAYS for their service? Is this not a contract?
More and more of my peers are encouraging their loved ones to go on state care. Is that really the answer?
I’m dedicated to advocating for these changes. Legislators, caregivers, mental health professionals and insurance companies need to come together and fix this economic problem.
Other great resources:
Your Commissions December 18, 2012 report is outstanding, as is the Connecticut Office of the Health Advocates January 5, 2013 report & the 2003 Blue Ribbon Commission Report.
NAMI Legislative Social Wednesday March 6, 2013
Insurance: Navigation, Step Therapy, and Parity (edited)
Thank you for coming tonight to listen to our voices as we speak for our loved ones.
I’m a lifelong caregiver of a non-custodial family member. I represent caregivers through my business Turtles & Lemonade. As caregivers we navigate the public, private and insurance mental health systems year-in-and-year-out.
I was asked to speak tonight on the lengths insurance companies go to with our loved ones to avoid covering mental health services within their policies.
(Story on how I had to intervene to get covered care for my loved one.)
What caused this crisis? Step Therapy, an administrator at her insurance company changed her medication to a generic from a brand name. The change was not by a licensed physician, not her Doctor. Remember her insurance company denied her the needed emergency care, which became necessary due to their decision that put her in crisis, she paid a dear price. A @$22.00 savings to the insurance company has now costs the state, herself and her family how many tens of thousands of dollars?
Without my stepping in what would’ve happened to my loved one? She couldn’t fight and advocate for herself, nor did she understand what was happening. The insurance company said no, she accepted that. This practice occurs while insurance premiums continue to rise, insurance companies post record profits, cut covered services and make decisions that cost their customer, caregivers and our state 10’s of thousands of dollars with each seemingly meaningless decision. (Studies available on my website.)
The true costs of providing proper mental health care coverage will decrease not increase insurance costs, reducing overall health care cost to all. Providing proper coverage will also reduce the need and associated costs of emergency hospitalizations.
Enforce the insurance parity laws currently in place. Begin true insurance reform with substantial penalties and no loopholes. Caregivers need to be able to trigger these penalties for our loved ones who are unable to for themselves. If you chose to do nothing you need be content with the insurance companies wish for these services to ONLY be offered by the government. Yet, remember that puts the burden for healthcare, support, housing, food, unemployment and SSI on to you.
It’s always a rush rush to take care of issues related to caregiving…. it never ends for us and we need your help to help our loved ones. The costs, loss of income, drain in state funds and the damage to our loved ones is real; we need our laws enforced and services protected. The cost to society is too high otherwise.
I’ve now dedicated my life to advocating for these changes; we have to use our voice for those who can’t use theirs.
Testimony: Ct State Legislature 3.8.2013
S.B. 262, & H.B. No. 5992 & Bill 374
Public Health Committee (edited)
I’m here today to speak in opposition of Bills 262, 5992 & 374
S.B. 262 An act requiring notice by Psychiatrists concerning patients that may pose a threat to themselves or others: Psychiatric professionals already have a duty to report dangerous intentions to the proper authorities. After hours each Psychiatric professional that I’m familiar with has a recording stating ‘If you are a danger to yourself, or this is an emergency, please go to your nearest emergency room.’ Will emergency rooms now be required to call and report a suicidal or depressed individual? Who are they reporting too? Why would a person in need of care subject him or herself to that? It is my opinion that the suicide and violence rate will rise as a result of the passing of this Bill. People who need care will be afraid to seek it. It is hard enough for people to reach out and now you’ll be adding another layer of fear to their plight.
H.B. No. 5992 An act concerning the treatment of persons with psychiatric disabilities: I oppose this Bill as written yet would support it if it applied to all medical conditions. HIPAA has truly hindered loved ones, like myself, from helping those in crisis, especially with respect to aftercare. There is no basis or need to single out one demographic through this Bill. Therefore, I strongly oppose it as it stands.
Bill 374 Behavioral Health Screenings: I strongly oppose this Bill as written. As written, this Bill will provide an assessment to a parent or guardian in a state that has too few available, accessible and cost effective mental health services. This session many committees have heard numerous mental health service providers, professionals and caregivers speak on the dire need for more private and public mental health services in our state and the reasons we don’t have more. My concerns with this bill follow:
(That section 10-206 of the general statutes be amended to require (1) each pupil enrolled in public school at grades 6, 8, 10 and 12 and each home-schooled child at ages 12, 14 and 17 to have a confidential behavioral health assessment, the results of which shall be disclosed only to the child's parent or guardian, and (2) each health care provider performing a child's behavioral health assessment to complete the appropriate form supplied by the State Board of Education verifying that the child has received the assessment.)
I appreciate your serious consideration of these mattes as presented. We all want what’s best for our children and state.
Testimony: CT State Legislature (TBG) 3.15.2013
To the Insurance & Real Estate Committee
Bill 6612 Mental Health Parity & Oversight (edited)
I’m here today to speak in support of Bill 6612.
1:4 Americans are caregivers of someone with a Mental Illness. Over 97% of those illnesses are highly manageable. 1:28 Americans are diagnosed each year with a Mental Illness.
So the real question is: Why do we need to discuss the merits of parity for a medical illness that affects the most vital organ in our body?
Without mental health insurance parity you accept that a person with stage 4 cancer whether 13 or 65, in excruciating pain will go to an emergency room to get care; as soon as their pain is managed, whether that is in 4 hours or after three days when the insurance company stops paying, pain free or not, they’re sent home with a RX only. No follow-up, support, nothing, until the next time they are in so much pain they need to come back. That could be hours, days, weeks, or months’ later but make no mistake about it, until that person passes they will be back and they will be in the ER with crisis level pain and all of the associated costs; real costs by insurance/family/personal, employment loss, etc…
That is unacceptable to any reasonable person.
Now substitute mental illness for cancer in the above scenario. That is the EXACT practice that we have in this country. I’m testifying to that fact today.
That is not parity.
That isn’t managed care, it is cruelty and certainly not what we pay our premiums expecting to get.
We would never accept a meds only approach for our loved ones with cancer without exploring the options and services available for the most successful outcome and quality of live available to them.
Insurance companies pressure the medical community to ignore proven successful best practices for quality of life and recovery when it comes to mental health services and maintenance.
Mental Illness is no different from cancer, or heart disease or diabetes. Society may not think that, or like that, but that is a fact.
Many caregivers feel that the goal of insurance companies with respect to Mental Health is to give them an RX to mask the problem or manage symptoms, send them on their way, and hope they don’t return which means they’ve passed due to negligent care. That is the exact opposite of our goal and our loved one’s goal. It is our feeling that the Insurance Industry’s position is that by using this model our loved ones sooner or later will no longer be a drain on their profits. What other demographic would we, as a society, accept this for?
As with cancer, early detection and managed care work. It is the most cost effective model for insurance companies, patients and society.
When you know better, do better, that’s all I ask.