Insult to Injury: Expungement?

Re: Talk about insult to injury?!! Fwd: [lme_providers] Expunction of Criminal Records in North Carolina
From: Crystal J. De la Cruz
Thu, Feb 21, 2013 at 1:35 PM


Dear Families, People of Conscience, Senators and House Members, and Federal Representatives,

Pardon my French, but seriously, WHAT THE HELL?

Please see below an listserv I received today in which Eastpointe MCO's CEO, Karen Salaki, offers up to her colleagues and underlings a helpful reference guide to Expunction of Criminal Records in North Carolina presumably for MHDDSA professionals and staff... which, in my humble opinion, is not only completely inappropriate for this field, but begs to question:

1. Is criminal activity really such a problem for employees in North Carolina's field of Health and Human Services that it warrants dissemination of this information to the entire NC Local Management Providers listserv?
2. And this problem, is it a global epidemic throughout the entire I/DD field or is it isolated to say, direct care staff who work with clients who can neither defend themselves and, in most cases, communicate their needs or fears?
3. Is there such a shortage of decent, trustworthy, qualified applicants that we gotta break the levy in order to widen the pool because it's near impossible to find direct care staff willing and able to work for what pitiful portion of funds are left after the hierarchy trickle-down?
4. Would you knowingly allow a convicted felon (even a non-violent one?) access to your home and more importantly, to babysit your children? How about a someone with just a little ole Class 2 Misdemeanor charge (in NC, charges of Simple Assault and Shoplifting are both Class 2 Misdemeanors, while Speeding is a Class 1) And would you allow this same individual to care for your elderly mother with dementia?
5. When are we as a society, as a state, as a community - going to STOP subscribing to this unwritten American caste system of human value?

I really hope this is a misunderstanding, however, given the trends of this entire Medicaid process, it feels more par for the course.

We, the parents and family members, are still waiting to be heard and taken seriously regarding our experiences, knowledge, expertise, fears, concerns, and stuff like this that we're simply shocked and appalled about. Gosh, there's really no end to all we could accomplish if we all chose to work together... Just sayin'.

Thank you in advance for you time and attention. As always, please do not hesitate to contact me at any time.


Kind regards,
--
Crystal J. De la Cruz - Hopper
Mother, Advocate & Concerned Citizen

When we allow the value of human life to be determined by capital gain, when we sacrifice the well-being of the most innocent among us to compensate our own shortcomings, and when we judge the worth of our most fragile, not by their character nor intention, but rather their abilities – We Are in Crisis.

http://no2nchb916.blogspot.com/

"The moral test of government is how it treats those who are in the dawn of life . . . the children; those who are in the twilight of life . . . the elderly; and those who are in the shadow of life . . . the sick . . . the needy . . . and the disabled."
--Hubert H. Humphrey


----- Forwarded Message
From: Listserve Administration
Reply-To: Listserve Administration
Date: Tue, 19 Feb 2013 16:53:33 -0500
To: NC Local Management Providers
Subject: [lme_providers] Expunction of Criminal Records in North Carolina

To: Provider Network
From: Karen Salacki, Chief of External Operations
Re: Expunction of Criminal Records in North Carolina

Attached is a very helpful guide on how to have eligible offenses removed from criminal records. Please share with applicable staff within your agencies.


This e-mail is for informative purposes ONLY.

Please do not reply to this e-mail.

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EXPUNCTION OF CRIMINAL RECORDS IN NORTH CAROLINA.PDF [460K]

Medicaid Block Grant & Impact on IDD Populations

From The Arc of the United States

Medicaid Block Grant Information

How will Medicaid Block Grants Impact People with Intellectual and Developmental Disabilities and their Families?

[ original post on thearc.org ] 

Introduction

The House Budget Resolution for FY 2013 calls for drastic cuts to Medicaid ($810 billion over 10 years) that would fundamentally reshape the program—making it less reliable for the people who depend on it and shifting costs to consumers and to the states.

For millions of people living in poverty, Medicaid is a safety net. For many of the 7 million people with intellectual and developmental disabilities (I/DD), Medicaid is a life line. People with I/DD typically require more complex and costly services than Medicaid recipients without disabilities. Frequently, they need care from several different types of health care providers and they often need the services throughout their lifetimes.

What is a Medicaid “block grant?”

A Medicaid block grant would be a fixed amount of money from the federal government to the states to spend on health care for people who are poor, elderly, or have disabilities with only general rules and very little oversight about the way it is spent.

Based on previous federal block grants and the general statements that House Budget Committee Chairman Paul Ryan has made about the FY 2013 House Budget Resolution, we expect that a Medicaid block grant would:

• cap the amount the federal government spends on Medicaid.
• NOT increase this amount to keep up with health care inflation.
• radically cut the federal share of Medicaid.

Why do some Members of Congress want to block grant Medicaid?

All health care spending is growing. Experts claim that it will continue to grow and become an ever larger share of our federal budget. Most Members of Congress are looking for ways to get our fiscal house in order. Some Members of Congress are focusing on the growth of federal spending in the Medicaid program. They believe that block granting Medicaid will save federal dollars. Under a block grant, federal funding for Medicaid would not grow when more people need health services. The challenge of providing health care without any additional federal money to people who are poor, elderly or have disabilities would fall to the states.

What are the most critical Medicaid services for people with I/DD and how does Medicaid pay for them?

The most critical Medicaid services for people with I/DD are:

• Acute care - including hospital care, physician services, and laboratory and x-ray services. These acute care services are mandatory which means they must be provided to everyone who is eligible. States have the option to offer (and most do) prescription drugs, dental, physical therapy, speech therapy, prosthetic devices and other services.
• Long term services and supports - including help getting dressed, taking medication, preparing meals, managing money, getting in and out of bed.

Medicaid is a shared program between states and the federal government and each pays for part of it. The federal share of Medicaid ranges from 50% to 75% of costs. As the need for Medicaid grows in the states, the federal government spends more.

Is Medicaid an entitlement program?

Yes. This means that if a person meets the eligibility requirements (generally poverty, age and/or disability), he or she is entitled to the services available under the state Medicaid program.

What are people with disabilities currently entitled to in the Medicaid program?

Today, each state’s Medicaid program is required by the federal government to provide a minimum level of coverage for the elderly, people with disabilities, and low-income adults and children in order to receive federal matching payments. Minimum services include seeing a doctor, getting x-rays, going to the hospital, receiving care in a nursing home and vaccines for children. Nursing home care is also an entitlement and Medicaid pays for almost half of the long-term care expenditures in this country. It is the primary payer of long-term services and supports for people with I/DD.

What might states do if Medicaid is block granted?

Block grants could force bad choices and cause substantial conflict as groups with diverse needs compete for scarce dollars. Since the services to people with disabilities and the elderly are significantly more costly than health care coverage for children, states could decide to serve fewer costly adults and people with disabilities and focus scarce health care dollars on less costly children. However there is no certain way to know what states will do. Below are possible choices states might make:

• States may reduce coverage of home and community-based services (HCBS) and supports. Most people who need long term services prefer to receive them at home. Over 650,000 people with I/DD receive long-term services paid for by Medicaid. States could decide to stop providing these services or limit the number of people who could get them. There already are over 300,000 people with I/DD on waiting lists for Medicaid home and community-based services. There are 730,000 people with I/DD living with aging caregivers who are approaching the time when they no longer will be able to care for their adult children with I/DD at home. If states stopped providing long-term services for people with I/DD, the waiting lists would grow and the situation for older caregivers would become more dire.
• States may decide to move people into institutions. Under a block grant, rules for providing quality care could be more flexible and conditions in institutions could return to the way they were in the past. With fewer requirements, it may be cheaper for states to care for people with I/DD in large facilities.
• States may reduce eligibility by making it more difficult to meet financial or other criteria. To be eligible for Medicaid, people have to be poor. States could restrict health care services to only the very, very poor.
• States may increase the cost burden on the individuals or family members. States may decide that families should take care of their family members who are elderly, ill or have disabilities. States might decide that sons and daughters should care for their parents when they become frail or ill without any public dollars. In order to get health care, people might have to pay more out of their own pockets. Since people on Medicaid are poor to start with, requiring them to pay for their medical care or long term services and supports could be an insurmountable barrier.
• States may eliminate or reduce the availability of critical services such as personal care, prescription drugs, rehabilitative services, or home and community based waiver programs. All of these services are “optional” under Medicaid meaning that states may choose to provide them under their Medicaid plans or not. If funds become scarcer, states may decide to stop providing these optional services.
• States may slash the amounts they pay to doctors and other providers. It is already very difficult for people using Medicaid to find doctors and other health care providers. Finding a dentist or a specialist, such as a neurologist, is impossible in some communities. If states cut the amount they pay doctors and other providers, those professionals may quit serving people under Medicaid making the problem even worse.

If people with disabilities lose their entitlement to Medicaid, couldn’t they just purchase private insurance instead?

No. Most people with I/DD cannot get medical insurance through an employer because they do not work full time. In fact only 21% of people with all disabilities are working (March 2011). Others cannot find health insurers who will sell them policies because of their pre-existing conditions. Many people with I/DD cannot afford health insurance. Some people with I/DD find that if insurers will sell them policies it does not cover the services they need or the coverage is exorbitantly expensive.

Why are we concerned that services to people with disabilities might be targeted in the states if Medicaid is turned into a block grant?

People with disabilities and the elderly account for most of the Medicaid spending. While children and parents make up about 75 percent of Medicaid enrollees, they account for less than a third of the spending. In contrast, the elderly and individuals with disabilities make up about 25 percent of enrollees but about two-thirds of spending. Medicaid spending per capita in 2009 was $3,442 for families (parents and children) and more than five times higher for the elderly and people with disabilities at $17,763. The elderly and people with disabilities use health care services more often and use more health services and the elderly and people with disabilities are more likely to use long-term services and supports. We are very concerned that states may slash the supports that help people with I/DD live independent, productive lives.

Are block grants cost effective?

A Medicaid block grant doesn’t control the cost of health care which continues to rise as people get older and use more health care services and as the general cost of all health care increases. They do shift more of the cost to that state and likely the individual. Costs may actually rise significantly because people who lose their health care or can’t afford it will stop seeing their doctors or taking their medication. When that happens it makes existing health conditions worse leading to more doctor or hospital visits and more costs down the road and the individual faces more illness and hardship. If home and community based services are reduced it will likely lead to greater levels of costly and unnecessary institutionalization or homelessness. If people are not provided needed services they may not be able to work, learn or function in the community. This creates lost productivity from the individual and family members if they are called upon to provide care when there are no other options.

What can advocates do?

Advocates must make clear to their Members of Congress that block granting Medicaid is not the answer to our nation’s deficit. Advocates must tell their Members what exactly is at stake. The health of people with I/DD may very well be at stake if it becomes more difficult or costly to access needed health services. What will happen if you or your family member loses services under Medicaid or if you have to pay for long term services and supports? Advocates must let their Members know what the biggest concerns are for individuals and families with I/DD if state Medicaid programs are turned into block grants. With less money, would states make it more difficult to become eligible for Medicaid?

• Would they cut benefits?
• Would they cut current levels of spending?
• Would they decide not to cover currently eligible populations?
• Would the states stop serving certain groups of people?
• Would they stop providing entire categories of services?
• Would people with I/DD be able to obtain health care?
• Would people with I/DD have long term services in community settings or would they be forced into institutions?

We must make our voices heard. We all understand that sacrifices will need to be made to address our nation’s money problems. Advocates need to help Congress understand that solving these problems is going to take a common sense, balanced approach. We cannot solve our problems only by focusing on the poor, the elderly, and people with disabilities.

[1] Center on Budget and Policy Priorities Rhode Island’s Global Waiver not a Model for How States Would fare under a Medicaid Block Grant, March 2011. Rhode Island’s block grant is held up as a model by some supporters of block grants. However, the state’s fixed amount of federal funds was greater than their normal federal share of Medicaid dollars. Rhode Island’s program does not reflect what likely would happen under block grant proposals currently being discussed. There also is disagreement about the state’s claims of savings under its block grant.

From Arc NC: Unintended Budget Cuts Must Be Fixed!

From The Arc of North Carolina

Unintended Budget Cuts Must Be Fixed!

[ view original posting ]

It’s time for the Governor and members of the General Assembly to fix the “unintended” reductions of the Social Services Block Grant (SSBG) for people with disabilities. Both legislators and the Governor’s administration seem to agree that an additional cut of $4.3 million to the community system was unintended. Unintended or not, this cut, on top of the $20 million intended reduction by the General Assembly, is causing serious harm to people with disabilities and their families.

It is hard do imagine that while the state is attempting to negotiate a settlement with the U.S. Department of Justice on ADA issues, we would allow further reductions to the fragile infrastructure of the community system. Services that allow people to live at home or in community residential settings are affected by this cut the most. Letting this “accidental” cut stand will hurt people.

The Arc, in a letter to the Governor, has asked that she take the lead on eliminating this cut. We are sending a similar letter to the House and Senate leadership asking them to join with the Governor to fix this unfortunate mistake. Hopefully, all parties will work together to do so.

Members can help by letting the Governor and General Assembly know that this cut must be restored. Let them know that our fragile community system cannot stand more reductions and that people with disabilities deserve better!

Contact:

• Governor Bev Perdue - governor.office@nc.gov (919) 733-5811
• Speaker Thom Tillis - Thom.Tillis@ncleg.net (919) 733-3451
• President Pro Tem Phil Berger - Phil.Berger@ncleg.net (919) 733-5708

Program Coordinator Needed for Lifetime Connections

FIF Lifetime Connections Program Seeks Program Coordinator

Program Coordinator for Lifetime Connections program; full-time, possible part-time options; generous benefits. Position is located in Durham at headquarters of statewide non-profit providing innovative supports and services to people with disabilities and their families. The Coordinator: recruits and maintains relationships with members, community connector staff and volunteers, ensures quality of services and support for member families, coordinates workshops, and manages budget. Seeking person interested in and experienced with disability issues and family support concepts, Community Development expertise, membership and volunteer recruitment, and budgeting. Applicant should have strong communication, organizational skills, be flexible to travel for some night and weekend meetings, and have use of car. 

First In Families of NC is an Equal Opportunity Employer. Review our website before applying: www.fifnc.org. Apply in writing to Human Resources; First In Families of NC; 3109 University Dr Suite 100, Durham NC 27707 or email betsym@fifnc.org. No calls or unscheduled visits please.

Betsy MacMichael

State Director

First In Families of North Carolina

3109 University Drive; suite 100

Durham, NC 27707

(919) 251-8368 X100

Fax: (919) 400-4846

www.fifnc.org

Believe, Achieve, Give Back

Arc NC's Legislative Summary

From The Arc of North Carolina
Legislative Summary regarding Developmentally Disabled Populations of North Carolina

[ original post ]


In this year’s legislative session, the General Assembly adjusted the budget, created policy direction in the budget, and passed important policy bills. The Arc worked on and monitored many issues of importance to people with intellectual and developmental disabilities as well as their families during the session. Below we have provided a brief recap of some of the most important issues.

Kindergarten Developmental Screening

Kindergarten Developmental Screening is part of the new budget bill (H950, which was passed by the General Assembly, vetoed by Governor Perdue, whose veto was then overridden, making the bill law). Section 115C-83.1 E orders the State Board of Education to ensure that every student entering kindergarten shall be administered a developmental screening of early language, literacy, and math skills within 30 days of enrollment. Section (e) states that the assessment shall be reliable, valid and appropriate for use with all children, including those with disabilities.

NC Teaching Corps to Include Disability Training

The new budget bill (H950, which was passed by the General Assembly, vetoed by Governor Perdue, whose veto was then overridden, making the bill law) establishes the North Carolina Teaching Corps, a training program for those who wish to become teachers via lateral entry (in other words, for those whose degree is not in teaching). The program is to include training on identification and education of students with disabilities, positive management of student behavior, effective communication for defusing and de-escalating disruptive and dangerous behavior, and safe and appropriate use of seclusion and restraint.

Personal Care Services and Short Term Rental Assistance to Adult Care and Group Homes

Personal Care Service (PCS) is a Medicaid funded service aimed at assisting individuals with disabilities with activities of daily living. Currently people who have Medicaid and live in a licensed residential setting receive one hour a day of this service.

The General Assembly choose not to follow the DHHS recommendation to create a 1915i option to address federal Medicaid officials’ concerns around Personal Care Services. The 1915i option is a relatively new Medicaid option for states to use. It allows for states to put in place Medicaid home and community based services without a Medicaid waiver. The Arc believes this option would best used to expand community based services for people with IDD.

Instead of following DHHS recommendations, the General Assembly passed language that will require DHHS to create a new Medicaid state plan amendment creating a comparable PC service for individuals living at home and in facilities. This impacts people living in Group Homes and Adult Care homes. The Arc has concerns that the new plan will eliminate PCS for some people (we are attempting to determine the scope), which could cause significant service reductions.

As part of H950, the Modify 2011 Appropriations Act, the State provided $39.7 million of non-recurring funding to provide temporary rental assistance to adult care homes. These funds will help pay rent at adult care homes for residents who are no longer eligible to receive Medicaid reimbursable personal care services (PCS), but for whom a community placement has not yet been arranged. Unfortunately, this fund will not assist residents who live in group homes and lose PCS. One of The Arc's top priorities for the interim will be to work with DHHS and the legislature to assure people living in group homes are not adversely affected.

Community Service Funding Cut

There was a $20 million non-recurring cut to community services funding. Approximately $345 million in State general funds remain in the budget for LME/MCOs to purchase community based services.

The Arc is disappointed in this cut. The original Senate budget had no cut in this area, and the original House budget had only a $10 million dollar cut. The change was made only two days before the final budget bill passed, giving little time for input from The Arc, other advocacy organizations, and families. We hope the General Assembly will restore this much needed funding during next year’s budget session.

Money for Transition to Community Living

As part of H950, the Modify 2011 Appropriations Act, the State allocated $10.3 million in recurring funding to speed up the transition of individuals with severe mental illness to community living arrangements, including establishing a rental assistance program. Some of the impacted individuals are dually diagnosed with a developmental disability as well. We believe this funding was allocated to respond to a potential negotiated settlement with the US Department of Justice (US DOJ) over North Carolina's use of Adult Care Homes as placements for people with Mental Illness, which it says violates Medicaid law.

Medicaid Shortfall Bills

There was a great deal of press surrounding the multi-million dollar Medicaid budget shortfall for the 2011-2012 fiscal year. The shortfall, initially estimated at $205,500,000, was addressed by S797 (Payment of 2012 Medicaid Costs/Inmate Medical Costs) early in the session. S797 drew funds from receipts, unanticipated federal bonus money, and Repair & Renovation Reserve Funds for the University of North Carolina System.

Unfortunately, in the last few weeks of the legislative session, it became obvious that there was an additional gap in Medicaid funding of approximately $94 million. To address this gap, the General Assembly passed H14, the Use R&R Funds for 2011-2012 Medicaid Costs Act. This bill appropriated $94 million from the Repairs and Renovations Reserve Account from the UNC System be transferred to the state controller. The controller was to manage Medicaid funding for the remainder of the 2011-2012 fiscal year.

LME/MCO Governance Bill(s)

HB1075 came out of the House subcommittee that studied the LME/MCO Governance issue led by Representative Nelson Dollar. It dealt with rules governing the makeup of LME/MCO Boards of Directors. The bill as proposed by the sub-committee, while not perfect, was a compromise reached with input from most stakeholders in the MHDDSA system. After the bill passed the House, Sen. Fletcher Hartsell added a controversial amendment to the bill would have allowed LME/MCOs that had been operational for three years to become “Behavioral Health Authorities.” This new classification significantly changed the method of accountability and operation of the MCO system. Most advocates, including The Arc, opposed these changes due to serious concerns on how the LME/MCOs’ new authority would impact people with disabilities and their families.

Ultimately, some legislative maneuvering resulted in a new bill (S191, LME Governance) that included the original Board member rules, excluded the Behavioral Health Authority amendment, and allowed for MCO's with over 1,200,000 people to create new board structures, if approved by the Secretary of DHHS.

Parents as Providers

As many of you know, there were quite a few changes made to rules surrounding parents as providers. These changes were by and large not changes in laws, but in administrative rules. The Arc is very concerned with these changes and will delve into the problems around this and related issues in the near future.

The following bills did not become law this past session

The Arc's Proposed Changes to H916
Though our proposal did not receive formal consideration, we were pleased with the broad based legislative support it received. We believe that the majority of legislators now understand why it is important to have an independent person working with families and individuals to write their Person-Centered plan. In a future addition of Policy Partners, we will discuss in more detail why this proposal continues to be a critical component if managed care is to be successful. For now, we want to thank you for your incredible advocacy efforts you undertook towards making these changes. Your voice was heard!

Eugenics Compensation Bill (Did Not Pass)

This bill would have set up a fund to reimburse victims of forced sterilization at the hands of the State. A large percentage of NC’s sterilization victims were individuals with intellectual or developmental disabilities. The bill passed the House, but was not taken up in the Senate.

On a somewhat brighter note, a last minute compromise between the House and Senate provided funding for the Eugenics board to continue its work during the 2012-2013 fiscal year.

Incapacity to Proceed (Did Not Pass)

If a person with I/DD is arrested, they (like everyone else) go to jail while they await a bail hearing/trial. Often, people with I/DD are found to lack the capacity to proceed to trial, and are sent to an institution for treatment. Often, they eventually reach a point where they are deemed capable to proceed with their trial, at which time they are sent back to jail, and their trial is put back on the schedule. Once back in jail, the person with I/DD often regresses, is once again deemed incapable to proceed, and is sent back to an institution for treatment as the cycle continues. There are documented cases of individuals with I/DD arrested for a crime spending far longer (years even) bouncing back and forth between treatment institutions and jail before trial than they would spend in jail if they were tried and convicted.

H1048 would of made outlined clear steps to avoid this type of situation for both misdemeanors and felonies. This bill passed by an overwhelming margin in the House (114-0), but was not taken up in the Senate. Representative Pat Hurley has said she will file this bill again in 2013.

We are disappointed that the Senate chose not to put such an important and widely supported bill on this year’s agenda, and hope they choose to take it up in 2013.

Voter ID Bill (Veto was not overridden)

Originally, The Arc worked extensively with Representative David Lewis during the 2011 long session on what became known as the Voter ID Bill (H351, Restore Confidence in Government). We tried to address the many concerns that existed in the disability community around the topic of voter ID. While we came up with compromise language that would of addressed most of our concerns, unfortunately the compromise language was ultimately stripped from the version of the bill. This stripped down version of the bill passed the General Assembly and was vetoed by Governor Perdue in 2011.

While an override attempt of this bill was on the calendar throughout the short session, it never happened. The bill is dead for this year, but a new version of the bill is expected in 2013. We again will work diligently with the bill sponsors to ensure that the concerns of people with disabilities will be addressed.

From The Arc of NC

Despite overwhelming support from families and people with disabilities across North Carolina, it appears the NC General Assembly will not act on The Arc’s proposal to restore balance in our state’s Managed Care Organizations. Without action, individuals with intellectual/developmental disabilities (I/DD) and their families will no longer have someone other than the Managed Care Organization write their person centered plan (plan of care), unless the MCO chooses to allow that option. Currently, no MCO in the state plans on offering this option. This means that plans of care for people with I/DD will continue to be developed by the same organization that determines how much funding an individual will receive.

Though our proposal faced long odds in the legislative short session, many legislators expressed support for the proposal. Unfortunately, erroneous information on the costs of our proposal given to legislators by certain MCOs, combined with the efforts of powerful lobbyists employed by some MCOs, proved too difficult to overcome. While there is still time for the legislature to act, it is unlikely any action will take place before their adjournment this week.

The lack of action will result in an additional ten thousand people with I/DD losing Case Management Services by January 2013, without the benefit of an independent broker working for them and not the MCO. Additionally, hundreds of private sector jobs will be lost while MCOs expand their workforce.

The legislature's lack of action is particularly disappointing since The Arc attempted to make our proposal fit what legislative leaders suggested. Though we believe a more robust private Case Management system makes sense for people with I/DD, we adjusted our proposal to the more limited two functions of Care Coordination. Legislative leadership needed a state budget neutral proposal, and our proposal would not increase the state budget. Our efforts were a sincere attempt to modify a model that is not a good fit for people with I/DD before the model was implemented statewide. The fact that legislators were unwilling to address these issues is very disconcerting.

While terribly disappointed in the outcome, we are pleased that so many spoke out for what is right for people with intellectual and developmental disabilities. Over 1100 North Carolinians from all parts of NC signed the petition to support this proposal with over 200 heartfelt comments about their situation. Hundreds of families called their elected representatives and participated in legislative meetings, making elected officials aware of the serious concerns they have about the future of our system.

The Arc encourages MCOs to listen to people with I/DD and their families in the coming months and contract with independent care coordinators to write plans and link to services, as is allowed under current law. Such a model, designed appropriately, will provide much needed support and be cost effective.

Regardless of the ultimate outcome of this legislative session, The Arc will continue its efforts to modify the State’s plan for Managed Care for people with I/DD. We believe legislators and administration officials, when properly informed, will see the flaws in the design of the current system for what they are and make appropriate changes.

We encourage families and consumers to continue to voice your concerns to legislators and the administration through all available channels. The Arc will begin publishing information on how best to influence the managed care Waiver implementation beginning in early July.

For now we want to thank all of you for your incredible advocacy this year! While not having our proposal adopted is disappointing, your actions significantly altered the debate around HB 916 in the legislature. Your voice will be needed more than ever as this transition moves forward.

DMA 8M Public Comment on CAP-I/DD 257

Note: Below is a Public Comment submitted to DMA regarding the 8M Clinical Coverage Policy proposal for CAP-I/DD during the 15 day comment period from July 28 - August 11, 2011. This exert was pulled from it's original source, a public record, and is posted exactly as it appeared save the removal of the submitter's personal contact information and abbreviation of last name.

[ More on DMA Public Comments. ]


Comment 257

To: Webmedpolicy, Dma
Cc: Marty Johnson; marysam@westernhighlands.org
Subject: comment on cap changes for I/DD
Sent: Thursday, August 11, 2011 1:35 PM

To whom it may concern,

The changes that maybe made to CAP for l/DD will greatly impact my "son'. Especially, the changes to Residential. lf the changes go into effect, my wife and I will probably have to seek ICF/MR placement for him.
This is a long story. My "son" came to live with us when he was five. He had already been assessed at Amos cottage in Greensboro twice which recommended that he be institutionalized. The foster home that he was in could only contain him by locking him in his room. He came to us with CAP services and we were his foster parents. During the first eighteen months, we had a habilitation worker for 6 non-consecutive months. No afterschool or summer program would work with him without a worker. Both my wife and I were taking off work to cover his care which started to put us in trouble at work. At this point, the local Area Program helped my wife to become his CAP provider. This solved the
problem for us for a long time. Our "son" made a great deal of progress. We had wanted to adopt him, CAP made several back and forth decisions on parents providing CAP services for their children. And given our experience with not being able to keep CAP workers(which put our jobs at risk), we decided not to adopt him to be able to continue to have him live with us. I could not see giving him our name, if he then had to live outside our home. Overall CAP has worked well for him and made a different prognosis from the earlier one possible. When my "son" became a teenager, it became necessary for my wife and I to switch roles. She now works outside the home and I work with my "son". My "son" has autism and mental retardation. And despite medical intervention, he does not sleep through the night. When he gets up, I have to get up with him as he willget into the kitchen, etc. without regard to his safety.
The proposed changes to residential with limits to day supports and respite v0ill impact us greatly. I have experienced working around the clock with our "son" during the last three summers of high school when no summer programs where available or would take him because of his activity level. When he left school and started a year round day program with day supports, lwas able to recover from being worn out. Now I am able to prepare for my "son" while he is at the day program.
For many years we had a couple who provided overnight respite for our "son" in spite of his not sleeping. But two years ago, they had to stop. Since then I have had one ovemight break, despite numerous requests for service providers. To keep going I have used hourly respite during the day to take a break. Without this it will be difficult to keep going and will place a financial hardship on our family.

Thank you for listening.

Martin J.
Asheville, NC

Legislative Correspondence to Sen. Tommy Tucker

Wed, May 30, 2012 at 4:48 PM

From: Crystal J. De la Cruz

To: Tommy.Tucker@ncleg.net

Re: DMA 2011 Public Comment Documents on CAP I/DD

Dear Senator Tucker

My sincere apologies for the delay in following up after our May 15th visit. I'm sure you can appreciate the sentiment when I say I've been "running around like a chicken with my head cut off."

I greatly appreciate your time and attention in meeting with [name stricken] and I regarding Medicaid Waiver concerns for the DD populations, their families and the wonderful providers who have kept us all afloat throughout this rocky journey. I recognize that this is not an easy time for NC and I do not envy your job as a Senator, so it means a great deal that you are open to having a dialogue. I sincerely believe that you want to see this baby put to bed and sleeping safely and soundly, so to speak, and I do admire your unwillingness to compromise your character... and that is why I sought to meet with you.

No, it's not an easy life raising a child with profound special needs - in fact, unimaginable to most, but I can tell you one thing with the utmost certainty: at the end of the day, it's our special folks who keep it real and truly put life in perspective. That is why I do what I do because I am the mother Isabel needs me to be. I firmly believe special people were not born to be tested, rather to serve as litmus to the rest of us. 

And that's why I maintain that there's so much more to these issues than fiscal accountability; besides Merriam-Webster defines accountability as: "the quality or state of being accountable; especially : an obligation or willingness to accept responsibility or to account for one's actions" Who among us are least accountable, least responsible for this mess than our special populations? 

Several members have expressed that they haven't heard from many parents. I keep pointing out that it is not an easy feat for many of these folks to pack up their kids with all their meds, supplies, sensory items, and equipment and travel hours away for a 30 minute - an hour meeting and well, most don't have the time nor vacation time because they use it all going to appointments with doctors and specialists. --Most of us do the very best we can with what we got and sometimes there's no extra left over. And sometimes when we do let the laundry or dishes go or forgo a shower to take the time to sit down and write a letter, send an email - pleading for help, it falls on deaf ears. 

Families need a little more acknowledgment than a pat on the head. Some of us are quite knowledgable, some are professionals in the field, some of us have really great ideas and we've been navigating system after system after new-and-improved system - but we are each experts in what we know. We need and deserve the respect of being heard by our Governor, the General Assembly and the administrators of entities entrusted to assure order and means in the survival of those they serve.

I am polishing up additional materials for you that I hope to send later today regarding our prior visit and conversation, though meanwhile I wanted to share with you the attached documents forwarded to me by fellow parent Mary K. Short who finally received them yesterday from Brad Dean at the DHHS Office of Public Affairs. Attached are the Public Comment response records from 2011 regarding the 8M CAP I/DD Clinical Policy proposals posted from 5/12 thru 6/26 and from 7/28 thru 8/11 -- a total of 540 comments; 618 pages. Pretty interesting reading. And this is what's missing - the human element.

Comments were made from across North Carolina by many parents and caregivers sharing heartfelt details of their lives as well as professionals, providers, and advocates in the DD field who know well the devastating impact such changes and service cuts would have not only on the recipients and families they serve and care for, but on their small businesses, their livelihood and the lives of staff they employ as well.

My sincerest hope that our elected officials - our Governor and members of the North Carolina Senate and House of Representatives - aspiring candidates, policy-makers, Health and Human Services administrators, LME's, MCO's, and other stakeholders and powers that be take the time now to hear that voice as our lives are in your hands... not merely the quality of our lives but rather our ability to live.

I know I'm asking a lot of you to sit down and skim through a 'book' like this but I also believe you want to assure this thing is done right; currently it's not. There's far more at stake than our State's broken-back budget - A budget crisis which cannot be rectified by plugging the dike with our finger and hoping for the best. Hoping there's not another crack - if we cement this model as it, the levee will break.

Thank you again for your time and attention and thank you in in advance for your considerations and efforts toward improving our State and our lives.

Sincere regards,

-- 

Crystal J. De la Cruz - Hopper

Mother, Advocate & Concerned Citizen

When we allow the value of human life to be determined by capital gain, when we sacrifice the well-being of the most innocent among us to compensate our own shortcomings, and when we judge the worth of our most fragile, not by their character nor intention, but rather their abilities – We Are in Crisis.

http://no2nchb916.blogspot.com/

"The moral test of government is how it treats those who are in the dawn of life . . . the children; those who are in the twilight of life . . . the elderly; and those who are in the shadow of life . . . the sick . . . the needy . . . and the disabled." 

--Hubert H. Humphrey

2 attachments

20110512-0626 NC-DHHS-DMA Public Comments 8M CAPIDD.doc [598K]

20110728-0811 NC-DHHS-DMA Public Comments 8M CAPIDD.doc [2786K]