What's New in January & February?

January and February 2013 news, events, and updates.

February

• Provider Stonewalling via Paperwork Nitpicking? (video)
• Adding Insult to Injury: MCO distributes helpful guide for NC Criminal Records Expungement
• Hundreds of NC's Licensed Mental Health Therapists Unable to Work
• Legislative correspondence to Senator Neal Hunt, 2/11.
• NC DHHS Request for Information, from 2/4.
• Critical Medicaid audit based upon unrealistic demands, from NC Policy Watch

January

• The 2013 ASNC Annual Conference in Charlotte, NC
• Registration Open for 2013 Disability Policy Seminar in Washington, DC
• 2013-14 DHHS Related Legislative Committee Membership and Full Appropriations 
• Geraldo Rivera: The P&A System (video)
• Ongoing problems with NC's managed care transition, and how to address them, from The Arc of NC
• Update from The Arc of NC on the Personal Care Services / Group Home Crisis 
• Mecklenburg gets more time to start Medicaid program | CharlotteObserver.com
• Special Medicaid Bulletin on b/c Waivers from DMA, Kelly Crosbie
• Parent email re: Gov. McCrory Press Conference 1/7/2013 and the MeckLINK issue
• Urgent Meeting 1/8 at 3P re MeckLINK
• New CAP I/DD Manual Posted
• Warnings Aplenty That MeckLINK Unprepared
• PBH Takeover of Mecklenberg County 
• CMS Creates New Office of Dual Eligibles  

[ What's New Main ] 

Critical Medicaid audit based upon unrealistic demands

http://www.ncpolicywatch.com/2013/02/04/critical-medicaid-audit-based-upon-unrealistic-demands/

Critics of North Carolina’s Medicaid program – the publicly-funded health insurance program for adults and children of low income – made some headlines in recent days by touting a new state audit that supposedly showed a large and previously unreported budget deficit. The critics, who included Governor McCrory and his State Health and Human Services Secretary Aldona Wos, claimed that Medicaid had gone $375 million over budget with state dollars and more than $1 billion over budget when federal dollars are included.

At the Governor’s news conference announcing the audit, DHHS Secretary Wos, lectured the Medicaid section of her agency: “Cost overruns will not be tolerated and will not be acceptable …There’s a budget for a reason.”

Conservatives are also using this audit as a reason for the state not to expand the Medicaid program to cover a half-million uninsured people as made possible by Obamacare (even though the expansion would be financed almost completely by the federal government).

There’s just one problem with McCrory and Wos’ conclusion: It’s bogus.

Like someone demanding blood be squeezed from the proverbial turnip and then professing to be “shocked” when the magic is not performed, the Medicaid “shortfall” is actually the result of absurd and unrealistic demands placed upon the program last year by the General Assembly.

Indeed, as anyone who pays real attention to the Medicaid program could have told the Governor and Secretary Wos last year, the overly-ambitious and ideologically-driven demands imposed by the General Assembly (and passed into law over then-Governor Perdue’s veto) were never realistic. Former Health and Human Services Secretary Lanier Cansler (a one-time Republican lawmaker) made this plain as far back as August of 2011 when he said:

“It’s just really going to be next to impossible to achieve this budget, and I’m not sure where the legislature will go with that. The fact that this budget plays into next year (means next year) is going to be a difficult budget year as well.”

Secretary Cansler reiterated this point in a letter sent directly to Republican General Assembly leaders again on October 27, 2011. According to Cansler:

“…aggressive budget cuts mandated by the General Assembly’s budget are unreasonable and unobtainable.”

Unfortunately, Cansler’s pleas had no effect.

Indeed, despite demanding massive Medicaid cuts, Republican General Assembly members further tied Secretary Cansler’s hands in January 2012 when the prospect of politically harrowing cuts in so-called “optional” services like artificial limbs and ambulance service (as well as major cuts in payments to doctors and hospitals) were on the table. The Legislature simply told Cansler to find other places to close the gap!

But, wait, it gets even more absurd.

Remember the amount in state funding the audit claimed the Medicaid program had exceeded its budget by ($375 million in state funds and $1 billion including federal money)? Here’s an amazing coincidence: Those sums are almost precisely equivalent to program cuts that the General Assembly demanded (but failed to provide the tools to attain) each year!

None of this is to deny the importance of efficiency. In a giant health program like Medicaid, one can and should always look for new ways to make reforms to be more efficient and effective.

But here’s another inconvenient truth for the critics: For the 2007-10 period (the most recent period for which national data are available) North Carolina’s Medicaid program had the lowest rate of spending growth of any Medicaid program in the United States. In fact, North Carolina’s Medicaid program spending growth was about half the national average! Not surprisingly, other states and even private health insurers are actually looking to North Carolina for lessons on how to run their own programs efficiently and effectively.

Got it? Over the last year and a half, in-the-know experts warned state budget-makers (and anyone else who would listen) repeatedly that the Medicaid program would not be able to meet the unrealistic budget set for it by the General Assembly.

For the McCrory Administration and the state auditor to effectively ignore this reality and then express shock and dismay when the program failed to meet such demands is, at best, remarkably disingenuous. At worst, it speaks to intentional misrepresentation of an efficient and effective program that delivers quality health care, garners strong support from the doctors and the hospitals doing the hard work, and makes a huge difference in the lives of over a million of our fellow citizens.

Adam Searing is Director of the Health Access Coalition at the N.C. Justice Center.

New CAP I/DD Manual Posted

For those of you still on the CAP-I/DD waiver, the manual has been posted to DMA's web site.

Here is the link to the new CAP-I/DD MANUAL ... I copied page 35, Section 4.4 that talks about family member as provider. I put the bold on the word "recommended." It seems some of the LME's still on the CAP-I/DD waiver are telling families NO MORE THAN 40 HOURS at all. It is clearly "recommended" rather than absolute. Your provider agency needs to go to bat for you with the LME and needs to tell the LME they want you to work more than 40 hours.

Mary K. Short
828.632.5888 or 704.451.4144 (cell)

http://www.ncdhhs.gov/mhddsas/statspublications/Manuals/index.htm
CAP-MR/DD Waiver Manuals

CAP I/DD Comprehensive and Supports Waivers (Released 1/2/13)
Manual Revisions
Manual for 2008 Waiver Comprehensive Waiver (Released 7/21/10)
Manual for 2008 Supports Waiver (Released 7/21/10)

http://www.ncdhhs.gov/mhddsas/statspublications/Manuals/cap-manual1-2-13.pdf

4.4 Waiver Services Furnished by Family Members Natural supports are the personal relationships that occur in every day life that support people to participate more fully in their community and enhance their quality of life. Natural supports include informal and unpaid supports that are generally reciprocal in nature. Person centered planning promotes the concept that paid supports should supplement, but not replace, natural resources and supports available to the participant.

Waiver services cannot be provided to minor children (18 years or younger) by their legally responsible person (parents, adoptive parents or step parents) and / or other family members living inside the home. Waiver services may not be provided by the spouse of the participant. In addition, the legally responsible person cannot own or operate the provider agency that provides services to their minor child / step child / adopted child or spouse.

When parents, family members and / or guardians of the person are paid care providers, they must meet all of the following conditions:

1. They must be employed by a provider agency and meet the same requirements for employment as any other employee.

2. They must meet all required provider qualifications as identified in the service definition(s).

3. A parent or relative who lives in the natural home of the adult participant may only provide Personal Care and/or Home and Community Support services. It is recommended that no more than 40 hours of service per week be provided by a parent or relative who resides in the same home as the adult participant. Additional hours may be provided by a parent or a relative as appropriate, as long as health and safety can be ensured and isolation does not occur.

4. When parents, family members or guardians of the adult participant are paid care providers, there must be a clearly defined back up plan that specifies who will provide the care when the parent, family member or guardian is unable to do so.

5. When parents, family members or guardians of the adult participant are paid care providers, the PCP must outline measures that will ensure the participant’s choice and control over his or her daily life and ensures community integration. Targeted case managers will monitor for compliance, health and safety and evidence of possible social isolation.

Connecticut Shooting Raises Questions About Autism

From DisabilityScoop

[ view original article here ] 

Connecticut Shooting Raises Questions About Autism

By MICHELLE DIAMENT

December 17, 2012

News that the gunman responsible for the Connecticut school shooting last week was reportedly diagnosed with Asperger’s syndrome is coming with a dose of caution from autism advocates.

A law enforcement official told The Associated Press over the weekend that Adam Lanza, 20, had Asperger’s. Lanza killed 26 people at the Sandy Hook Elementary School in Newtown, Conn. Friday, most of them children in the first grade.

But autism advocates say the diagnosis does not explain the mass shooting and point out that there is no link between the type of planned violence that Lanza displayed and the developmental disorder.

“There is absolutely no evidence or any reliable research that suggests a linkage between autism and planned violence,” reads a statement from The Autism Society. “To imply or suggest that some linkage exists is wrong and is harmful to more than 1.5 million law abiding, non-violent and wonderful individuals who live with autism each day.”

Those who knew Lanza described him to The New York Times as shy and socially awkward. While those traits are characteristic of autism, self-advocates caution that having the condition does not suggest whether a person will do good or bad things in life.

“While the majority of statistics prove that we are infinitely more prone to be the victims of violence than the perpetrators of violence, we are not immune from becoming people capable of making terrible, horrible choices. No one is,” said Michael John Carley, executive director of the Global and Regional Asperger Syndrome Partnership.

Nonetheless, experts at the Judge David L. Bazelon Center for Mental Health Law said the tragedy calls attention to the lack of mental health services currently available.

“The real problem is that community based services — including mobile crisis services, assertive community treatment, peer supports and supportive housing — are in short supply, delaying hospital discharges and resulting in mental health crises that could otherwise be prevented,” the organization said in a statement. “A stronger commitment to vital community mental health services is long overdue and must be paired with improved gun laws in order to prevent future tragedies.”

Great article from Disability Scoop (...though not a surprise to those of us who live it every day!)

[ view original article here ]

Disability Caregiving Can Be Health Hazard, Study Finds

By SHAUN HEASLEY

December 17, 2012

Parents of children with developmental disabilities are experiencing health consequences stemming from their caregiving responsibilities, a first-of-its-kind study suggests.

Researchers found that parents of those with developmental disabilities have higher blood pressure than those with typically developing children. Given the risk of cardiovascular disease facing such parents, the finding “reinforces the notion that caregiving is hazardous to one’s health,” researchers report in the study published this month in the journal Research in Developmental Disabilities.

For the study, researchers followed a group of 35 parents of children with developmental disabilities and a control group of 30 other moms and dads. All of the parents wore a blood pressure monitor for 24 hours and each responded to questions about themselves, their stress level, the types of behaviors their child displays and the extent of support they receive from others.

Overall parents of kids with developmental disabilities reported a higher level of perceived stress, more challenging behaviors and less social support. What’s more, the parents of kids with special needs had higher blood pressure on average at all points during the 24-hour period, the study indicates.

Significantly, when researchers controlled for various factors, they found that challenging behaviors and stress level were not associated with the blood pressure level recorded, but the amount of social support was.

“We found these parents, who were mostly caring for children with autism and Down’s syndrome, were more stressed and had less social support had higher blood pressure than other parents,” said Stephen Gallagher of the University of Limerick in Ireland who led the study. “More importantly it was reporting of lower social support that seemed to explain the higher blood pressure in these caring parents.”

The study is the first to directly measure and compare the blood pressure of these two groups of parents, researchers said.

Gallagher and his colleagues said the findings highlight the need for better supports for caregivers.

Important Info. re: SIS

Forwarded to me by a provider / mother...

*Note attachments below.

-----------

The Supports Intensity Scale—SIS—is the new tool used to determine the level of services and supports needed for people on the Innovations Waiver. I have attached a copy of the child version and the adult form (age 16 and up).  Currently, DDTI is scheduling these interviews for about 5,000 people.  If you have not been selected yet, the SIS will be completed before the 2014 plan of care is developed.  

I have participated in one child and one adult interview. It is very different from the NC-SNAP in that the person and his/her family and staff are asked to identify what types of supports are needed in order to accomplish a variety of activities. Specifically, you will be asked to rate the frequency, time and type of support needed for your family member. A same aged, non-disabled person is the point of reference. There are 57 questions in the adult version with more than that for children. Remember that each question has the three component parts.   The first question is presented below as  a sample.

Please pay attention to this interview tool. It  is critical because the budget for your family member’s services will eventually be tied to the SIS outcomes. While you can appeal the results of the interview, it is important that you be prepared for the two to three hour session.  Print the form down and review it. The child form is longer and the document has more description of the instrument, but review it.  Make certain that you take with you the staff person (or two!) who know your child’s needs best. I completed the form in anticipation of my adult son’s interview. He was unhappy with having to talk about himself and he did not make it through even half of the interview before he left. That didn’t bother the interviewer. I also took a list of his diagnoses and medications with me as well and had examples and illustrations.

EXAMPLE:  Using the toilet. 

Compared to a same aged, non-disabled person, what is the frequency of support needed?

O = none or less than monthly

1 = at least one a month, but not once a week

2 = at least one a week, but not once a day

3 = at least once a day, but not once an hour

4 = hourly or more frequently

Compared to a same aged, non-disabled person, what is the daily support time needed?

0 = none

1 = less than 30 minutes

2 = 30 minutes to less than 2 hours

3 = 2 hours to less than 4 hours

4 = 4 hours or more

Compared to a same aged, non-disabled person, what is the type of support needed?

0 = none

1 = monitoring

2 = verbal/gestural prompting

3 = partial physical assistance

4 = full physical assistance

SIS Form Example for Adults

SIS Child Version

What's New in October

October 2012 news, events, and updates.

• An Open Letter to Ann Coulter and then some...
• CAP I/DD... this is NOT NC Innovations, from Parent Advocate Mary K. Short.
• Federal Medicaid Block Grants and the Impact to I/DD Populations and Families from The Arc of the United States.
• Voting Information for Adults with Disabilities - Make Your Voice Heard, from The Arc of North Carolina.
• Crisis in Personal Care Services in NC, and How to Address It from The Arc of North Carolina.
• NCGA JLOC on HHS Meeting Notice for 10/16.
• added to Google Events Calendar.
• A Day in the Life... [personal note]

[ What's New Main ]

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.

Crisis in PCS in NC, & How to Address It

From The Arc of North Carolina

Crisis in Personal Care Services in NC, and How to Address It

[ original post ]

Issue:

For thousands of North Carolina citizens with intellectual and developmental disabilities (I/DD), as well as people with mental illness, the Medicaid State plan service "Personal Care" (or PCS) has provided supplemental funding for housing supports in small licensed group homes.

Earlier this year, the General Assembly raised the level of disability needed to receive PCS. Now, individuals must require assistance with three activities of daily living [ADL’s]. This rule applies to both in-home and facility based services, to achieve legally required comparability. Unfortunately, most individuals living in licensed group homes will no longer qualify.

This change could reduce a group home’s budget by up to 30%, creating significant budget shortfalls- yet another hardship for an already struggling community-based option.

Not only does this reduction affect the provider’s ability to provide basic support services, in many cases it could lead to an inability to meet the group home’s debt obligations. Many of these homes were financed using US Dept. of Housing & Urban Development (HUD) funding streams, and a significant number are tied together through HUD approved refinancing methods. If vacancy rates rise due to lack of support services, well over 250 properties could be at risk of failing.

Recommendations:

For most people living in these types of homes, PCS was not their most needed service. Individuals living in these settings most often need support services to allow them to live successfully in communities. For people with I/DD, they are most likely support services that are habilitative and for people with mental illness they would be recovery based support services.

For both populations there are Medicaid options that, if designed correctly, could support people in these settings and other community based options that should not increase the state funds needed to provide these supports. Unfortunately, it is impossible to get these new service definitions designed and approved by the Center for Medicaid Services by December 31- the end date of the current PCS definition.

With this in mind, we would recommend the following course of action.

1. Extend the state funds available to people living in Adult Care Homes to licensed group homes. Thirty-nine million dollars is already set aside for adult care homes during this period of transition. This reserve should be extended to licensed group homes as well. People living in licensed group homes often have more significant disabilities than the individuals in adult care homes and deserve the same protection provided by the funds appropriated for adult care home residents.
2. For people with IDD- Immediately begin the work of creating a specific 1915i option for services[s] that would support individuals living in community settings- both licensed and non-licensed. The 1915i option is a near perfect fit for this type of service. Not only can it provide funding to offset the loss of PCS, it could be designed to offset the state services dollars that are used in group homes and provide another meaningful Medicaid service for people living in other community settings. The match money for these services could come from already appropriated community base state funds. Preliminary estimates by The Arc indicate that a carefully crafted 1915i option could support individuals in these homes and make a significant dent in the waiting list without any additional appropriations from the State.
3. For people with Mental Illness– It is possible that the same type of 1915i option services may make sense for people with Mental Illness. It may be more difficult to craft services definitions that assure cost neutrality, but this option should be explored immediately.

At the same time, the state should review the possibility of creating a recovery-based support service under Medicaid that could be used in non-licensed community settings as well as licensed settings. Since Mental Health services are recovery based, such a service could be created without the use of a 1915i. In both cases, 1915i or state plan service funds already used for community services for people with mental illness could be used for match.

These recommendations are straightforward solutions to what will become a significant crisis if we do not act. While there may be other options, we suggest the above actions because they have to potential to solve the problem short term and create a low cost solution for the long term that is consistent with best practice. If we are able to follow this path we not only stabilize the licensed community based options but create good options for individuals who choose to live in less restrictive settings.

A Day in the Life...

Lots of people have hectic lives. Apparently, it's the new norm. We barely have time to sync our tech devices designed to simplify our hectic lives.

These days we're all running ourselves into the ground trying to keep up with the necessities of life, let alone the rest of our "To Do" lists. Anyone with a job or children is swimming in a bubbling cesspool of stress and chaos; those with jobs and children are just trying our best to stay out of the psych ward... and for those of us who work and have children with special needs, God help us, because a mental health breakdown emergency just isn't an option - especially if you live in North Carolina!

A couple of months back, I was filling up at a local gas station and chatting with the kindly manager about the damaged fuel pump which had been knocked ajar from its island perch. He tells me that people are so busy, distracted and hurried that they don't pay attention to what they're doing... "I can believe it," I tell him, "I've seen people drive off with the pump nossel still inserted in their gas tanks." He shook his head and tells me that that happens at his store at least 4 or 5 times a month.

Why do I bring this up? Because we, as a society, all need to slow down and pause!

We need to take a step back, take inventory of our lives, our purpose, our priorities and our conscience... To take a look at what's really important to us right now in this moment. Are we where we need to be? And even more importantly, are we being the best of who we are in every decision we make? Especially those in positions of authority... Like those whose names you'll see on the ballots this fall.

Whether you're "just a parent," a laborer, professional, CEO, a politician, or an ordinary Joe - consider: what will be your legacy? Will you be remembered for your uncompromising compassion and honor for humanity or will your eulogy read like a padded resume?

Every decision creates action and every action has an impact -- upon us individually and upon the world around us. Sometimes we don't always get to see it and most often, we don't go looking. Ignorance is bliss as they say. 

Sometimes I wish I could be blissfully ignorant. But I digress...

So lemme share with you the catalyst for this post; a recent adventure in my special mommie life as can only be imagined by other special parents - a typical, atypical day if you will:

This past Thursday, I finally got around to taking my 6-year-old son to the pediatrician for his Kindergarden Heath Assessment and shots as it was the very last day before the school would have to kick him out (frankly, considering I've had over 20 doctor's appointment this year for my daughter, I naturally forgot the "typical" child).

When I was Liam's age, I was deathly afraid of needles. (Of course, I happened to have the nurse from hell back then who loved nothing more than a tender young caboose for target practice...) I spent quite a bit of time talking to my little guy about the reason we must have certain vaccinations, breathing techniques, how he had to be very brave, and it would only hurt for a moment.

When the time came for his two shots, my little man was so very brave he barely flinched and shed nary a tear! I was over-the-moon proud and tried my utmost to make the rest of the day be a celebration of his triumphant big-boy milestone... though it was short lived.

Not two hours later as we played in the back yard waiting for Daddy to come home so we could have a special dinner and tell him how awesome and brave our big boy had been, Miss Kim, Isabel's  wonderful Habilitative Tech (direct care worker), came running through the door in a worried fit of panic and announced that Bell had just eaten a wild mushroom at a nearby park. Oye.

Yes, it seems that our daughter, who has never been in the habit of eating random stuff off of the ground (though an unattended picnic is another matter), decided to help herself to a little snack... I certainly don't fault Miss Kim in the least; Isabel is quick like that, especially after she's heard her name combined with the word "No!" But now the party was over and Liam was left to entertain himself as we sat about trying to figure out what to do.

According to Dr. Larry Grand, mycology expert and Professor at the NCSU Department of Plant Pathology, 98% of all mushrooms are not poisonous; however digestion of the other 2% can produce results ranging from "a minor upset stomach to a rather painful protracted death, depending upon the species of mushroom eaten, the amount eaten, and the person who has eaten it." 

After spending some time perusing internet photos of mushrooms in an effort to try to identify what percentile Bella's snack fell into, we narrowed it down to the Bolete species (as evidenced by the presence of pores rather than gills on the underside of the mushroom cap) - of which there are many, many varieties, most of which being edible varieties, though, a few being deadly 'evil twins.'

I attempted to reach Dr. Larry Grand by phone as well as emailed to him photos of the remainder of Bell's snack, then heeding Dr. Grand's "Steps to follow if it is suspected a person has eaten an unidentified mushroom," I packed an overnight hospital bag for me and Isabel in anticipation of a long night ahead involving Ipecac cocktails.

Poor Liam. Once again, it was no longer about my "typical" child, rather his proud and special day was overshadowed, no - pushed to the back and buried, by yet another freak emergency resulting from his sister's unintentional antics. --That is not to say that I wasn't worried and frightened for my daughter as any parent would be in such a situation. Though when you have a child with the cognitive understanding of a perpetual toddler, emergencies, accidents, incidents, outbursts, etc. are an all too common occurrence - and yes, the whole family's life, schedule, and system of being, more often than not, revolves around the child whose excessive needs demand your constant attention and care. Everyone else sucks it up and moves to the back of the bus. (Heck, truth be told, parents aren't even on the damn bus. We're kinda running along behind it trying to keep up.)

My proud big brave boy, who had not shed a single tear during his shots earlier that day, was still crying when I left with his sissy for the hospital. 

We arrive at the children's ER, I give Bell's name to the lady behind the desk and begin explaining why we're there while Isabel grabs everything on her desk, starts signing "potty" emphatically (not because she actually has to go, but rather to steer my attention back to her), before she spies the hand sanitizer and sprints off across the lobby to douse her hands. We're told to have a seat and someone will call our name.

While simultaneously praying that my child had not poisoned herself, I was filling with dread (and guilt and heartache) imagining a sleepless night of shrieks, being hit and slapped by an angry sick child, and  fun with vomit. --A half hour or so had passed when my husband called to say he had just spoken to Dr. Grand (God bless him!) who, thankfully, was able to positively identify the mushroom remains from the photos as a non-poisonous variety. Isabel would be fine.

Thank you, thank you Dr. Grand!

As I said, a typical, atypical day in our life, the life of a family caring for and loving a child with profound developmental disabilities... There is no pause for us, no down time, we never get to clock out or recharge, plans are subject to change constantly and there is never a dull moment - and we just roll with it because it's what we do. Because we love our children unconditionally.

We've all heard the proverb, "It takes a village to raise a child." Well, it takes a society to care for special populations - our most vulnerable and pure of heart. We cannot do it alone and we cannot make do with less - we already are.

Now, back to legacies: I can only guess what colorful descriptors might comprise my eulogy one day... stubborn and strong-spirited, honest to a fault, opinionated, moody, mouthy, fearless and strong, aggressive and somewhat intimidating... while I've heard it all and then some at one point or another and perhaps there's some truth there; I take no issue either way. 

Though I hope somewhere in there someone will be able to say: She was loyal and genuine and compassionate; she always spoke her truth and always fought for what she knew to be right and just with a clear conscience... I hope they can say: She was a great mother and loved her two beautiful, amazing children; there was nothing more important to her than nurturing their little souls... and she never, ever gave up.

Thoughts to Share...

Hi, All!

Those of you who already know me are aware that I am more comfortable in small group settings where information is being actively discussed verbally…  so this form of communication is a stretch for me… blogging.  I have had to learn to stretch much in my life as has many of you, too…  and each stretch has its time of pain and relief.  Pain in the act of learning how to do it and relief that perhaps I will not only live through it but actually find something of value to take away to help my family and others and hopefully personally grow into that person I always wanted to be when I grow up…;)!  Therefore, with that said, I will be sharing in this venue as though I am visiting with you all in a small group to encourage dialogue so we can all learn together!  One of the HUGE advantages I find in this venue is that whatever your schedule, you can access and be part of the conversation... 

Now, talking about VERY serious topics that affect lives so directly is vital to finding real world solutions; however, I have also learned from my middle daughter, Cassie, just how VITAL humor is to life, too…  so I am taking a life stretch lesson from her and hoping you all will allow me this license to suggest we create our own version of a traditional arcade-style game to help us work through our frustrations while we learn together as well… and just maybe a better real world solution will emerge… (Okay, I admit it freely, I have often been accused of being a dreamer…  but we all know, too, what is needed is also possible…if we work together throughout the system!)

So…

Have you ever played Whack-a-Mole? You know, the arcade-style game where a mole suddenly appears and you have a soft mallet that you hit it to score points… the game increases in speed as you progress through the levels until the moles appear so frequently and randomly you cannot predict where they will appear or react fast enough when they pop up…and then soon after, the GAME OVER sign appears… and your tickets earned spit out of the meter for you to go redeem at the prize counter and it usually takes a LOT of tickets to get the item you actually want when you get to the counter?  Yeah, that is the one I am talking about…;)!!

Traditional Whack-a-Mole Arcade Game

picture source is http://www.arcadeamusements.com/products.cfm?n=products&id=154

I mention this game because at first glance we feel we are caught in this type of arcade-style life where the holes in the ground are the various funding streams, service definitions, operational functions, etc and the moles are the various items that seemingly pop up all of a sudden and are all “urgent” in some way or another requiring our immediate attention, input, advocacy.  It is so hard to keep up with what is happening in the URGENT file (the moles appearing quickly on the screen) much less to delve into understanding where it is coming from or what is causing them to pop-up in the first place (ongoing systemic issues that require deeper investigation along with committed effort and resources to address).   

Crystal with help of others has provided this site with extensive information that shows the moles on the screen in the “Urgent” file and additional in-depth sourcing information that gives a view into the tunnel to understand why.  I applaud this approach to allow ANYONE interested to participate at whatever level desired.

So, let’s play a round of Whack-a-Mole together… shall we?!  For today, I select the Medicaid funding channel and the current “Urgent” mole is the imminent change at the end of this month from CAP-MRDD plan to the CAP-IDD Plan.  This does not affect those who are currently being served through NC Innovations Waiver.  See the CAP-IDD Decision Flowchart below:

Please share your thoughts, and also let us know which “mole” should we take a whack at understanding better at our next blog time together?   (Be aware that just like the game, we often have a “mole” appear in the same place many times usually for different aspect of that topic that needs dealing with at that moment)…    

    

To all those who know that “Game Over” can truly be a life and death matter for those we love and does reflect the overall health of a community, too!    ~ Anna