US Law Takes Grand Step to Protect Grandfamilies- Grandparents and Others Rearing Children Of Family Members Receive Support

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In the United States today, children are increasingly being reared and even formally adopted by family members—most often, their grandparents. Many of these grandparents have been caring for their grandchildren as a result of the opioid crisis, taking on unanticipated or unexpected caregiving roles, sometimes even as their own children work through their addictions and treatments.  Given the death and disability associated with the opioid crisis, and the related or unrelated increasing suicide rate, families are increasingly forced by circumstance to make sure that children stay within their birth family and avoid the alternative of the foster care system. 

No wonder; more than half of the children in the child welfare system have endured four or more adverse childhood experiences, leaving them 12 times more likely to have negative health outcomes – substance use disorders, mental health problems, and engaging in aggressive or risky behaviors – than the general child population.  According to the 2017 State of Grandfamilies in America Annual Report, compared to those in care with non-relatives, children cared for by relatives have more stable and safe childhoods and a greater likelihood of having a permanent home. They have better mental and behavioral health, and are more likely to report always feeling loved.  Grandparents and other relatives who step in to care for children play an important role in preventing trauma, which children in the child welfare system experience at starkly higher rates than the general population.

Indeed, it is not only grandparents who are stepping forward to rear the children of parents with substance abuse or other issues: brothers, sisters, aunts, uncles, grandparents, and other extended family members, kinship caregivers, are stepping forward to fill the void created by the death or impairment of a child's parent. But, grandparents are by far the most common to bear the burden; they play the key child-rearing role in the lives of 2.5 million children—that’s 3% of all U.S. children.  All told, 7.8 million children, - that's 10% percent of all U.S. children- are being reared by family members who are not their birth parents.

The number of grandparents who report that they are raising their grandchildren, is reportedly 2.7 million, but it is likely that the actual number is far greater, as many families don't or won't disclose that parent's are unable or unwilling to rear their own children.  Some grandparents quietly assume the role of parent, often without consideration of the financial, legal, or medical challenges they may later encounter. 

This form of kinship care is so prevalent, it has its own name- the grandfamily, a freshly minted moniker born of necessity and tragic circumstance, describing the now common familial sacrifice and commitment.

Kathleen Kelly Halverson, writing for Adoption.com, in an excellent article,  properly characterized the meaning of such sacrifice:

"These grandparents are not just saving their own families: They are literally saving our country as well..."

That is not exaggeration or hyperbole; Generations United, a national nonprofit group, has estimated that grandparents and other relatives who are raising children informally save taxpayers $4 billion each year, but what value can be placed on a single child that is loved, supported, and healthy- physically, mentally, and emotionally- let alone the literally several million children, reared free from impairment, free from the torment of abuse, and able to care for themselves and others?  

And yet, these grandparents and kinship caregivers struggle financially, physically, and emotionally,  and, too often, silently. Grandparents struggle with their own health concerns and their own physical limitations, as they dip into retirement funds to ensure that their grandchildren are properly reared. Some grandparents may not even know that resources and support are available to them.  

The past year has seen the U.S. make a grand step forward in supporting these grandfamilies and kinship caregivers. The Supporting Grandparents Raising Grandchildren Act ("Supporting Grandparents Act"), which cleared the Senate unanimously in June, and was signed into law by President Trump in July, supports these guardian-saviors by creating a federal task force to establish a one-stop shop of resources for grandparents who are raising grandchildren. 

“Grandparents are increasingly coming to the rescue,” when addiction, overdose or other circumstance deprives a child pf parents, said Sen. Susan Collins, R-Maine, who chairs the U.S. Senate Special Committee on Aging. Collins cosponsored the bill with the committee's ranking member, Sen. Bob Casey, D-Pa.

These grandparents are “replacing traumatic pasts with loving and hopeful futures,” Collins said. Stepping up for a second round of parenting, especially when the family is dealing with the fallout of opioid addiction, comes with a barrage of decisions and challenges, such as “delaying retirement, navigating school systems, bridging the generational gap, working through the court system to secure custody and finding mental health services,” said Casey. Grandparents need a one-stop resource that provides contacts and information that will help “in that moment of crisis in that family,” said Casey.

The Supporting Grandparents Act has the backing of 40 advocacy groups for older adults and children, including AARP and the American Academy of Pediatrics.   A federal advisory council will include a grandparent, an older relative raising a child, together with experts from several federal agencies; it is charged with locating established resources across the country, investigating best practices, researching how to most capably rear children, and finding useful information for older relatives rearing and supporting children, with a special focus on those affected by opioid addiction.

Nancy LeaMond, AARP’s executive vice president and chief advocacy and engagement officer, praised Congress for taking action, saying, “[t]he federal advisory council will identify, promote, and disseminate information about this vital support and the resources available to help grandparents create and maintain a stable home environment for their grandchildren so that they can thrive.”

The Supporting Grandparents Act follows passage of the Family First Prevention Services Act ("Family First Act"), which became law in February.   The Family First Act is landmark child welfare law that works from the principle that children do best in families.  The Family First Act addresses an array of services and programs, but specifically provides financial and non-financial support for kinship caregivers, such as grandparents rearing grandchildren.  

The Family First Act provides first time federal reimbursement for prevention services and programs.  Federal child welfare dollars can be used for up to 12 months of services and programs to prevent children from entering foster care by supporting the triad of generations in grandfamilies - children, kinship caregivers and parents. The children qualify for services if they are “candidates” for foster care, meaning at imminent risk of entering foster care and can safely remain at home with parents or with kinship caregivers.  Children whose adoption or guardianship is at risk of disruption or dissolution qualify. 

Kinship caregivers or parents of the children also qualify for services if they are needed to prevent the children’s entry into care. Children and families can receive these services more than once if the child is again identified as a candidate for foster care at a later date.  The prevention services and programs include:

• mental health treatment;
• substance abuse prevention and treatment, and;
• in-home parent skill-based supports.

States, too, receive assistance in the form of federal reimbursement for up to 50% of their expenditures to provide kinship navigator programs that meet certain evidence-based requirements. This federal support is available regardless of whether the children for whom the services are being accessed meet certain income eligibility requirements for Title IV-E foster care funding.

The Family First Act seeks to improve licensing standards for relative foster family homes.  The Secretary of Health and Human Services (HHS) was required to identify a model of family foster home licensing standards by October 1, 2018, which the Secretary dutifully published August 1, 2018, sixty days sooner than required, a fact notable because the speed with which the federal government is working to reform existing law speaks loudly of its commitment to change.  You can, compare and contrast the federal licensing standards with those suggested by advocacy groups, such as the Model Family Foster Home Standards developed by the National Association for Regulatory Administration (NARA), Generations United and the American Bar Association.

By April 1, 2019, each state must report to HHS on the following:

• are the state standards in accord with the model and if not, why not?
• does the state waive non-safety licensing standards for relatives, as allowed by federal law?
• which standards does the state most commonly waive?
• if the state does not waive, why not?
• how are caseworkers trained to use the waiver authority?
• does the state have a process or tools to assist caseworkers in waiving non-safety standards so they can place quickly with relatives?
• what steps are the state taking to improve caseworker training or the process?

The Family First Act does not leave behind those children unfortunate to have no available kinship caregiver.  Under the new law, if children need to come into the custody of the child welfare system, the law encourages the placement of children in foster care in the least restrictive, most family-like settings appropriate to their needs by not allowing the use of federal funds for inappropriate group placements (effective October 1, 2019 although a state may request a delay for up to two years). Federal funds may only be used for a few specific types of group placements, including a qualified residential treatment program (QRTP).  An important component of the appropriate use of QRTPs is the requirement to facilitate and maintain family connections. To be considered such a program, the program must assist and encourage outreach to the child’s family members, including siblings and close family friends known as ”fictive kin,” and the child’s family must be a part of the child’s treatment.  This requirement includes family-based support for at least six months post-discharge. 

As part of the assessment to determine if a QRTP placement is necessary, the placement preferences of the family must be considered, and children must be placed with their siblings unless it is not in their best interest. If the placement preferences of the family are not followed, the reasons must be documented as part of that assessment process.

A QRTP service provider must:

• Be licensed and be accredited by at least one of three federally approved accreditors: The Commission on Accreditation of Rehabilitation Facilities (CARF), Council on Accreditation (COA) or The Joint Commission (formerly JCAHO);
• Use a trauma-informed treatment model;Have registered or licensed nursing staff and other licensed clinical staff, available 24/7, on-site according to the treatment model;
• Demonstrate family engagement and outreach, including siblings, in the child’s treatment;
• Provide discharge planning and family-based aftercare supports for at least six months post-discharge.

The accreditation mandate sets a high bar, but helps ensure the delivery of high-quality care. Organizations that earn accreditation have reached beyond the minimum licensing standards and made a long-term commitment to strong governance, program consistency, outcome measurement and continuous improvement throughout their agencies.

Accreditation also requires organizations to undergo an objective review by an independent accrediting body and signifies that they are effectively managing their resources and enhancing the quality of life for the population served.

The Family First Act also seeks to improves interstate placements, a significant step in an increasingly mobile and diffused society.  The Act expedites interstate placement of children in foster care, adoption or guardianship by requiring states to use an electronic interstate case-processing system by no later than October 2027 for exchanging related data and documents.

Further, the Family First Act extends guaranteed funding for child and family services programs. The Act extends funding for five years (fiscal years 2017-2021) for two critical service programs for children and families in the child welfare system-- the Stephanie Tubbs Jones Child Welfare Services Program and the Promoting Safe and Stable Families Program.  The Act also improves the John H. Chafee Foster Care Independence Program, and extends to age 23 the financial, housing, counseling, employment, education, and other appropriate supports and services to former foster care youth. It further extends eligibility to age 26 for Education and Training Vouchers.

Finally the Family First Act reauthorizes the Adoption and Legal Guardianship Incentive Program for five years.  The Incentive Program allows states to receive incentive payments based on improvements in increasing exits from foster care to adoption or kinship guardianship.  These incentives should encourage and aid in transitioning children to qualified grandparents or kinship caregivers from foster care.

Significant challenges demand significant response.  Fortunately, the federal government has risen to the challenge. 

This article is based upon and largely draws from "Trump Signs Bill to Help Grandparents Raising Kids,"  "Trump Signs The Supporting Grandparents Raising Grandchildren Act Into Law, and those referenced in the body of the article.  This article utilized the Children’s Defense Fund’s detailed summary of the Family First Prevention Services Act of 2016, available at ww.childrensedefense.org, and the Generations United detailed summary of the Act’s grandfamilies’ provisions, available at www.gu.org. 

Assisted Living Focus Changing from Hospitality to Aging in Place

According to Senior Housing News, the assisted living industry is changing from a hospitality-based model to one incorporating more health care options to allow seniors to "age in place."  

The shift in operational strategy comes as more seniors indicate a preference for assisted living to moving in with family members.  Whether seniors want to avoid becoming burdens to their children,  want to avoid loss of autonomy many seniors believe follows moving in with family, or simply want to avoid the practical, financial, and legal challenges cohabitation presents, older adults seem to increasingly view assisted living as a better option than moving in with family members.

The shift in operational strategy coincides with an industry-wide effort to improve quality of care. As reported here, a January GAO Report raised serious questions regarding whether CMS could properly oversee and regulate the quality of assisted living care, in what some called "a national scandal."  The industry has reportedly responded with efforts to improve, maintain, and demonstrate quality outcomes.  The Long Term Care Community Coalition (LTCCC) recently released its own report identifying key best practices and policies for assisted living facilities to regulate their own operations, and ensure the safety and dignity of residents. The report lays out guidelines and requirements for staff training including cross training across multiple subject areas, establishing licensing and certification requirements where appropriate, allowing for alternative training methods, and required training assessments, LTCCC Executive Director Richard Mollot told Senior Housing News.  

Although there is still both risk and uncertainty for consumers, there is great promise for seniors and their families if the industry shifts its focus to meet the objectives of seniors, while simultaneously tightening operational standards.  Regardless the short-term outcome, the recognition and incorporation of Aging in Place as a discreet objective means that the industry is seeking to meet the goals and objectives of seniors and their families, rather than simply achieving bureaucratically imposed requirements of a health care system concerned primarily with cost containment.  An industry leading the government is a welcome and promising possibility.         

You can read more here.

New Alzheimer’s Vaccine Could Cut Cases In Half

Scientists at the University of Texas, Southwestern have created a DNA vaccine for Alzheimer’s.

It’s thought that the formulation could decrease cases by half.

The vaccine utilizes DNA from Alzheimer’s proteins, from which the immune system learns to fight the compounds and prevent them from collecting in the brain.

The researchers believe human trials are finally in sight.

Dr. Roger Rosenberg, Director of the Alzheimer’s Disease Center at UTS (and also the organization’s founder), said the breakthrough is the result of many years of trial-and-error:

“[It’s] the culmination of a decade of research that has repeatedly demonstrated that this vaccine can effectively and safely target in animal models what we think may cause Alzheimer’s disease.”

According to the Alzheimer’s Association, every 65 seconds, someone in the U.S. develops the disease. 1 in 3 senior citizens die with it or another form of dementia. 5.7 million Americans currently suffer from the terrible condition, for which there are noted risk factors but very little treatment. By 2050, that number is expected to reach nearly 14 million.

Seniors with Dementia Abandoned by Family Caregivers at Hospitals and Homeless Shelters

Jeremy Jojola, investigative reporter for Denver KUSA/9NEWS, has published a heart-wrenching story uncovering a horrifying, but all-too-common, practice of family caregivers abandoning seniors suffering from dementia by abandoning, and stranding  seniors in public airports, malls, hotels, hospitals, homeless centers, and in at least one instance, a local McDonald's.  Jojola described the plight of 80-year- old Jerry Ellingsen, who suffers from Alzheimer's:

Within the bustle and organized chaos of Denver's massive airport, an 80-year-old man with Alzheimer's disease named Jerry Ellingsen was found wandering alone after traveling with his small dog from Fort Myers, Florida. 

Jerry didn’t know where he was or why he was in Denver.

A United Airlines supervisor found Jerry confused and alone, with only a small dog, near an exit door outside the ticket counter, and promptly called the police.  A police report indicated a flight attendant described Jerry as possibly suffering from Alzheimer’s.  One Denver police officer spoke with Jerry, and noted in his report:

“He was very confused about general details of his life to include where he was at, where he was coming from, who he was coming to visit and his family members’ names."

Police looked up the woman who checked him into his flight, and ended up talking to his daughter.  Police soon learned that Jerry's daughter, who was his agent under a Power of Attorney, put him on the one-way flight from Fort Myers, Florida.  She intended for Jerry to live with his estranged wife, but had texted the estranged wife only the day before with a simple notification that Jerry, and his dog "will arrive on a flight in Denver tomorrow afternoon."  The daughter made no other arrangements to transport her father, or communicate with her father's estranged wife, until sometime after he arrived, and then only texted the estranged wife, "[i]f you need to drop my dad at a homeless shelter, it’s fine. I just want him to have a roof over his head. Please." 

Jerry's family refused to rescue Jerry so police transported Jerry to University of Colorado Hospital. Laws require hospitals to admit and keep at-risk adults who’ve been abandoned until caseworkers can find safe placement for them, which can lead to extended stays for months and even years.

Jerry’s story sparked a 9Wants to Know investigation into at-risk adults who end up languishing in hospitals because they have no family to take care of them, or a facility willing to take them in due to a lack of space, finances, or appropriate scope of care.  The investigators conducted a point-in-time survey with the help of the Colorado Hospital Association because hospitals do not keep track of stays by people like Jerry.  Investigator Jojola described what the investigation discovered:

A three-month long 9Wants to Know investigation is uncovering a growing health care epidemic where hundreds of people like Jerry are abandoned every year at metro-area hospitals. The epidemic is costing hospitals and in some cases, taxpayers, millions of dollars a year.

Nineteen metro area hospitals participated in the survey, which revealed on a single day in September, 113 at-risk adults were stuck in the system, beyond medical necessity.  Of those patients, about 30 percent had mental health issues like Alzheimer's and dementia. Most of the stranded people were men over 40 years old.  The longest stay was 577 days!  

According to the article, Denver Health has a special wing called the "Oasis Unit" that houses around 30 at-risk adults on any given day. Denver Health reports it expected to spend $18 million on the Oasis Unit in 2018.  Anecdotally, Denver Health officials cited a case that resulted in a stay of eight years in the Oasis Unit.  Tax payers and consumers end up bearing the cost.  Hospitals in Colorado can cost up to $2,500 per day, per patient. 

A Knoxville television station also broadcast a report about Jerry's case.  Both reports indicated that charges were unlikely to be filed against and member of Jerry's family. The video broadcast identified the daughter's name, who, ironically worked for a health care agency specializing in providing health care for seniors.  

Instances of professional caregivers abandoning patients and residents are well-documented (see, for example, here, here, and, see here, what is hopefully an usual case in which professional caregivers abandoned a couple, who were then later abandoned by a privately paid professional caregiver who had worked for the first professional caregiver).  Family abandonment is less well understood and documented.

Given the stress and strain of caregiving, and the feelings of helplessness and abandonment that caregivers often feel, it is possible that caregivers simply surrender, leaving their vulnerable wards at risk.  Regardless, the only solution is advanced planning, including considerations of the demands and risks of caregiving, and the costs of same.  Greater education and support for caregivers from the community is also well past due.   

Nursing Home Compare Does not Accurately Reflect Patient Safety In Nursing Homes

The standard measure for capturing quality at nursing homes does not paint an accurate picture of patient safety, and changes are needed to aid residents in their decision making, reports an article in McKnight's Long-term Care News.

That’s according to a new study, published in the November issue of Health Affairs. Researchers took a closer look at data from the Certification and Survey Provider Enhanced Reporter (CASPER) and the Nursing Home Compare archives, aiming to see if star ratings accurately represented potential safety dangers at SNFs.  The researchers compared nursing homes’ performance in standard quality measures with six noted patient safety measures — including pressure sores, infections, falls and medication errors. They noted that the relationship was weak between the two measures, “leaving consumers who care about patient safety with little guidance.”

Changes must be made to give potential residents a better sense of the safety landscape, said Daniel Brauner, an associate professor in the Department of Medicine at the University of Chicago and lead author of the study.  “Nursing home compare should look more specifically at these safety measures because consumers are quite concerned about those things, for their loved ones,” he told McKnight’s. “The rating system should take these specific safety measures more seriously and make them a bigger part of its methodology.”

Results were gathered using data for the first quarter of 2017 from NHC and CASPER, representing more than 15,600 facilities. They found that, overall, performance on falls and urinary tract infections for long-stay residents, along with pressure sores for short-stay, showed “little meaningful difference” across star ratings. Meanwhile, medication errors and pressure sores for long-stay residents tracked more closely with star ratings, though with a weak correlation.