Initial Tips for Taking Care of An Aging or Elderly Parent

My mother and me (Photo/Ronald Foster)

I have become my mother’s keeper. I’m still surprised at how fast it happened. It was as if I had climbed up a steep hill and before I had a chance to catch my breath – the earth started crumbling underneath me; causing me to run like hell – scrambling to find safe ground.

Two years ago my then 83-year old mom was relatively self-sufficient and in good health mentally and physically. There were minor signs where she gave me moments of disquiet, but my mom and I handled them. Then in Spring 2016 she got dizzy and fell; resulting in facial and arm fractures. At the time I thought it could’ve been worse and that she would recover. She healed physically, but changed mentally and emotionally. She’s gone from being an independent person and I’ve become more than just her daughter who lives out-of-state. I’m now responsible for my mom’s custodial, medical and financial care.

For some adult children they may have more than two years before they find themselves taking care of an elderly parent or relative. Others wish they had two years instead of the months, weeks or even days before the caregiver role was thrust upon them. Most of us aren’t fully prepared for this role, even those who think they’re prepared discover that is far from the case.

Who are  Caregivers?

According to a 2013-2014 Bureau of Labor Statistics Survey there are “40.4 million unpaid eldercare providers (caregivers of adults ages 65 and older) in the United States.” Along with the ever-increasing number of caregivers has also been a change in the role and responsibilities of caregivers, which has gone from simply checking-in on an elder to more complex duties.

2013 Pew Research Center survey reported that the role of caregivers “encompasses everything from buying someone groceries and managing their finances to helping them with bathing, dressing and other tasks of daily life.” In a 2012 survey conducted by the American Associate of Retired Persons’ AARP Public Policy Institute and the United Hospital Fund stated that the  role of family caregivers “has dramatically expanded to include performing medical/nursing tasks of the kind and complexity once only provided in hospitals.”

Adjusting While Learning

It has been an unexpected transition for myself – since like most kids you expect your parent(s) to grow old, yet still be somewhat the same. That hasn’t been the case for my mother. I have watched my mom transition into various stages: from living on her own to post-surgery recovery then rehabilitation; acknowledging that she can no longer live on her own; not wanting to relocate out-of-state to live with her daughters to accepting that she will be in a senior care facility for the foreseeable future. In the interim, I have spent a lot of time with my mother while also interacting with her physicians, friends and business contacts on top of our family members. I have had to deal with a lot of information and make short and long-term decisions regarding my mom. Luckily family and most of my mom’s friends still live in the same city/state as my mom – so they’ve been my eyes and ears concerning my mother. At times it hasn’t been easy, but I’ve learned a lot on the way. Most importantly, I’m glad that I’ve been able to be there for my mom.

Below are some tips (NOT legal advice) for those who may find themselves having to take care of an aging or sick parent/relative. Keep in mind, there’s always going to be a new or unexpected situation that will arise when caring for your parent. However, these initial tips will save you some initial pain as you begin this journey.



ParentTalkingWithAdultChild.GettyImages.Edwards1. Talk and Listen to Your Parent– If you have a decent-to-great relationship with your parent, then that’s half the battle in being a good caregiver. However, when you do talk to your mother or father make sure to talk to him/her about what’s going on with them day-to-day. Not just in generalities, but the details (i.e. what’s bothering them physically, emotionally, financially, their doctor appointments, prescribed medications, friends, activities, errands they usually run, etc). Find out who they talk to and spend time with when you’re not around or available. Don’t turn it into an interrogation; which may inadvertently put them on the defensive. Just make sure to be fully-engaged in the conversation, which means having your listening ears on, asking questions and being patient. If/when you have to step-in for your parent due to an accident or an emergency you will have a better grasp of what’s going on with him/her, which will be important when speaking with medical professionals.

ManOnSmartphone.GettyImages.Woo2. Add Your Parent’s Phone Contacts To Your Phone – Your parent’s contacts are those individuals whom you have heard him/her mention more than a few times such as friends, doctors, acquaintances, former co-workers, physicians, organizations, and businesses. Your parent’s contacts may be listed in his/her personal phonebook or their cellphone/smartphone (if they’re a member of the digital age). Adding their contact information (name, phone numbers, home address, email) to your smartphone (or having them written down in a notebook) will make it easier to reach out to them, if necessary, concerning your parent.

WritingDownContactInfo.GettyImages.spxChrome3. Provide Your Parent’s Close Friends With Your Contact Information – Your parent’s friends will want to visit your parent, to check up on them and make sure they’re doing okay. It is important that they have your contact information (name, phone numbers, email address), especially if you live out-of-town. Your parent’s friends can let you know how your parent is doing or if something is amiss. They can be a valuable asset information-wise in helping you take care of your parent. Don’t wait for them to call you, make a point of calling them as well. They will appreciate that you care.

ExtendedFamily.GettyImages.DavidSacks4. Keep Family Members In the Loop Regarding Your Parent’s Care – If you happen to live some distance from your parent, you will need back-up to help you take care of your parent. Your ‘back-up’ could be a family member, friend of your parent or members of her community – anyone who have expressed interest in helping you take care of your parent. Use phone calls, texts or detailed FYI emails to keep everyone updated regarding your parent’s care. This type of information exchange will make sure that everyone’s on the same page information-wise concerning your parent’s care, especially when interacting with medical staff.


FamilyMeetWithDoctor.GettyImages.ThomasBarwick1. Go to Medical Appointments With Your Parent – Meeting your parent’s general/primary care physician and specialists in-person (even if it’s only once) are golden opportunities to get to know your parent’s doctors, ask questions about your parent’s health and remain in-the-loop in regards to your parent’s medical care. Plus, once you’ve met the physicians and staff it will be easier to get updates and information via phone calls because they have met you, which is especially beneficial if you don’t live in the same area as your parent.

NotepadAndPen.GettyImages.Westend612. Take Notes When Meeting With Medical and Administrative Staff – Unfortunately, the medical profession has a bad habit of dispensing information and medical terminology much too fast to its patients, especially its elderly ones, for them to readily grasp. If you happen to be hospitalized it’s even worse because physicians and nurses sometimes fail to identify themselves (i.e. name, title/medical specialty) and tell you succinctly when you’ve been prescribed X or need to do Y. As your parent’s advocate it is important that you stop physicians, nurses and other medical staff in their communicative tracks with questions (i.e., what is your name, what is your medical connection to my  parent, what medication did you provide my parent, etc.) and make sure you write it down and keep records (or get copies) of what you’ve been told.

MedicalRecords.GettyImages.RezaEstakhrian3. Get A Copy of Parent’s Most Recent Medical Records – This information is important to have in case of an emergency or when you’re dealing with new physicians. If you’re in contact with your parent’s primary care physician you should be able to obtain this information readily. Also, if your parent is hospitalized make sure to get a copy of the discharge papers for your records as well. The discharge papers will include important information such as the names and contact information for the physicians who treated your parent, medications prescribed and the procedures that were performed (i.e. surgeries). Note: Some physicians – possibly those you haven’t met – may request a copy of your Power of Attorney document before releasing your parent’s medical records and/or be willing to speak with you about your parent.

PrescriptionBottles.GettyImages.VstockLLC4. Keep A List of Their Medications – You should know what medication (prescriptions and over-the-counter) your parent is taking, its usage and the prescribed dosage. You should be able to get a copy of your parent’s current medication from his/her primary doctor. Another option is to check your parent’s medicine cabinet (or wherever he/she places her medicine) and write down the information. It’s also important to know the name and contact information of the pharmacy your parent uses. This information could come in handy in case of a parental emergency if medical staff are in need of an updated prescription list.


StackOfCheckbooks.GettyImages.StevenPuetzer 1. Have Your Name Added to Your Parent’s Bank Account – You and your parent must be in agreement with this decision, plus you will both have to go to your parent’s bank to make the change to his/her account. Once your name is on the account it will be easier to manage your parent’s finances if/when they’re unable to do so (i.e. make online payments/pay bills on their behalf, check for suspicious activity, etc.). This type of access is wonderful if an emergency arises and you happen to not live nearby or out-of-state from your parent. One of the things that will help your parent recover from an accident or hospital stay is knowing that their financial/business affairs are being taken care of while they’re temporarily incapacitated.

FinancialStatements.GettyImages.090420162. Get Copies of Your Parent’s Banking, Credit Card and Other Financial Statements – It is important that you know your parent’s monthly income (pension, social security, etc.), savings (bank account, CDs, investments) and expenses (i.e. credit cards, utility bills, mortgage/rent payments, life insurance, health insurance, burial plot, etc.). Knowing your parent’s income may be important in terms of how much your parent and/or yourself can afford when selecting a rehabilitation center, nursing facility, assisted living or in-home nursing care for the short or long-term. Also, some rehabilitation and nursing homes will have income-sensitive requirements in order for your parent to become a resident such as 1) financial limit to how much your parent can have available resource-wise (i.e. amount in checking and savings accounts, life insurance value, stocks and bonds, etc.) and/or 2) proof of your parent’s expenses in order to determine your parent’s monthly custodial costs (i.e. food, bed, medical care). Therefore, it’s important that you are aware and have an understanding of your parent’s financial status.

LastWillTestament.GettyImages.090420163. Know Where Your Parent Keeps Treasured Items and Important Papers – You need to know where your parent keeps her prized possessions or significant belongings such as their last will and testament, birth certificate, deeds, heirlooms, emergency funds or photos. Don’t assume that everything will be in one place or in an obvious location such as a safe deposit box, desk drawer or bedroom closet. Your parent may feel uncomfortable that you’re asking him/her about this because it reminds them that they’re getting older, but don’t let that deter you. You don’t want to be in the situation of trying to locate items on your own because your parent is no longer mentally able to provide you with any guidance.

HospitalRoom.GettyImages.090420164. Have Your Parent Complete A Living Will or Advance DirectiveA Living Will allows an individual to give explicit instructions about when/how medical treatment is to be administered when he/she  is injured, terminally ill or permanently unconscious. An Advance Directive pertains to decisions or instructions regarding a patient’s end-of-life care. It is important to have your parent complete a living will or advance directive while he/she still has the mental capacity to do so. Depending on the state, the process can be as simple as your parent filling out a form with a witness and then having both of them sign-it. Other states may require more of a legal step such as a notarized durable power of attorney for health care which names you as the person trusted to make health care decision on behalf of your parent. Check your parent’s state-of-residence statutes or guidelines for details and guidance.

PowerOfAttorney.GettyImages.090420165. Make Sure You Have Power of Attorney – A Power of Attorney (PoA) gives you the authority to operate on your parent’s behalf in regards to their medical, financial, business and legal affairs. These ‘affairs’ can range from selling your parent’s home, handling their medical care, canceling cable service, discontinuing utilities, or making monthly bill payments. Most companies will require a PoA from the caregiver in order to cancel any type of service, that is, if the parent is unable to do so himself.  Whether a PoA is needed to fully manage your parent’s affairs and what is required to process a PoA varies from state-to-state (i.e. simple letter authorizing PoA, notarized PoA forms, completed PoA forms submitted by a practicing attorney, etc.). It’s very important that you check the state’s statute of where your parent resides to find out what is legally required regarding PoA arrangements. If you are still flummoxed about the PoA process,  most cities and counties have a Department of Aging that could be helpful. Another option is your local American Bar Association’s (ABA) Pro Bono Section which can help help you through the process. Of course you can also seek out a private attorney- via personal contacts or the ABA- who specializes in elder law to help you with this procedure. Note: Some financial institutions have their own PoA form (separate from the general PoA) that you and your parent might have to complete and have notarized in order to legally access/manage your parent’s bank account(s). Check with your parent’s financial institution regarding their PoA requirements. Banks generally don’t post its PoA form online, so you will have to get copy of the form at your parent’s financial institution.

socialsecurity-image-yetbw-blogpost6. Get Legal Authorization to Manage Social Security Checks. More than likely as part of your parent’s income he/she receives a monthly payment (also known as a social security check, social security payment or retirement benefits) from the Social Security Administration, (SSA) a U.S. federal government agency. Since the SSA doesn’t accept the validity of Power of Attorney authorizations, you will have to become a Social Security Representative Payee in order to legally access and manage your parent’s social security checks/payments. Becoming a Payee will require a visit to your local SSA office – the process can’t be completed online. You can expedite matters by bringing your parent with you to the SSA office. However, if you and/or your parent are unable to visit the SSA office jointly (e.g., you happen to live out-of-town from your parent, your parent has limited mobility and/or health issues) an SSA customer service representative should provide you with a medical assessment form (determination of your parent’s ability to handle his/her social security checks) to be completed by your parent’s doctor and returned to the SSA. If you’re approved by the SSA to be your parent’s Representative Payee, you will receive paperwork from them detailing your custodial rights to manage your parent’s social security payments. Also note, if your name is on your parent’s banking account you will be required to set-up a non-joint account in your parent’s name specifically for SSA online check deposits. This process may seem annoying, time-consuming or unnecessary, but keep in mind that SSA wants to protect “beneficiaries who are incapable of managing their Social Security or SSI (supplemental security income) payments.” Plus this ‘step’ will also give you another layer of protection concerning your parent’s income and finances.

SetOfKeys.GettyImages.090420167. Make Copies of Key(s) To Your Parent’s Home – Having access to your parent’s home will make it easier to take care of your parent during an emergency. The last thing you want to be doing is scrambling around trying to find her landlord, a locksmith or a family member to help you gain entrance to your parent’s home. If your parent has his/her own home then duplicating the key is a simple task. However, if he/she lives in an apartment and has a master key (which prohibits duplication) you might have to pay for a duplicate key via the property manager. If you live out-of-town from your parent it is probably a good idea to provide a trusted family member or friend  with copies as well. Note: If your parent has other areas that require access (i.e. car, mailbox, home security) make sure you have the keys and codes to these as well.


RelaxingInPark.GettyImages.09042016Take Care of Yourself And Keep in Mind That This Is A Journey – When you find yourself on this road with your parent it will be hectic, tiring, aggravating and disheartening. Your parent will have good and bad days – and when the bad days come you might find yourself the recipient of their anger, depression or hurt. You will also feel like you’re not doing enough and too much  for your parent logistically, financially, emotionally or spiritually. As a result, there will be times you simply don’t want to spend time with and/or talk to your parent because they’ve worn you down, made you feel depressed or even angry. These feelings are normal and you shouldn’t run away from them, though occasionally it will be hard not to beat yourself up over having them. For some, these feelings are connected to the fact that they miss the way their parent used to be or some of the things they used to do, even if it was just the simple ‘how was your day’ chats. In order for you to manage this phase of your life you can’t let it consume your life. Worrying about your parent will always be in the back of your mind, but it’s important that you do things to alleviate the pressure such as allowing others to help you, talking to an understanding friend, going to the movies, reading a good book, joining a support group, hanging out with family and friends or simply taking a day to spend time with yourself. You should also make a point of seeing a physician and/or counselor if you’re noticing a change in your physical and/or mental health (i.e. loss of appetite, lack of energy, depression, anxiety, resentment, etc.). Remember – in order for you to be able to take care of your parent you have to take care of yourself.



AARP Resources for Family Caregiving – The American Association for Retired Persons’ (AARP) website has a lot of information for caregivers (e.g. guides, tips, resources, etc.) whether you’re new to the role or are a seasoned caregiver.

American Bar Association Commission On Law and Aging – Has toolkits and information on making legal and healthcare decisions on behalf of an aging parent or relative.

Caring for the Caregiver – PBS resource webpage specifically for caregivers. It includes links to finding support groups, getting started in the caregiver role, and a self-assessment test to help caregivers recognize symptoms of stress and how to take care of themselves.

Five Facts About Family Caregivers – Pew Research facts about “caregivers of older Americans.”

Family Caregiver Alliance Caregiving Across 50 States – Profiles contain each state’s background characteristics related to caregiving and aging as well as information on publicly-funded caregiver support programs.

Mayo Clinic: Living Wills and Advance Directives for Medical Decisions – Information and documents from Mayo Clinic Staff in regards to medical arrangements when “you’re not able to speak for yourself.

Power of Attorney Forms – This website provides ‘power of attorney’ (PoA) form templates for all 50 states. Note: You should only use these forms as a starting point, since the forms may not be current due to changing state PoA laws. Make sure to check 1) the statutes of your parent/relative’s residential state for the most recent PoA laws or 2) an elder law attorney to ensure that your form is accurate and up-to-date.

Propublica Nursing Home Data – Allows you review and compare nursing homes in a state based on the deficiencies cited by regulators and the penalties imposed in the past three years.

U.S. Department of Health and Human Services’ Administration on Aging – Links to information, resources and services regarding older individuals and their caregivers

Understanding the Rules: Medicaid Payment for Nursing Home Care – Booklet designed to provide family and caregivers with “information and answers to some of the [nursing home-related] questions [they] will encounter.”

Why do fake rumors such as ‘vaccines will cause child autism’ work?

Note: This blog is based on a 2011 Quora post I did in response to the subject of false rumors re childhood vaccines. I actually forgot about my Quora response until I was reminded of it recently due to a conversation I had with a co-worker (a soon-to-be first time mom) who was full of worry.  Unfortunately there are many people like her who have allowed fears regarding their child(ren) drown out their parental happiness. So I decided to re-post my response (with some changes) here.

Many would chalk the susceptibility of the ‘childhood vaccines cause autism’ rumor to the lack of scientific and/or biological knowledge, when it’s primarily a result of parental fear.

‘Parents With Child’ statue in Bratislava, the capital of Slovakia, 2006 (Photo courtesy of Kelovy via Wikimedia Commons)

When you become a parent you want the best for your child. The fear of anything bad happening to him/her is always in the back of your mind (i.e., being hit by a car, disease, major fall, severe injury, etc.) – like some kind of worse case scenario. I have a young son and I still experience s a sense of queasiness whenever I think about him being harmed in any way or when I’m watching him do something that could potentially cause injury.

However for some parents this fear, almost paranoia, is with them at a high level every day. Of course some would say not without good reason. This culture of parental fear surrounding having autistic children, children with birth defects, etc. most likely started in the late 1950s. Physicians at that time were prescribing expectant moms with Thalidomide, a sedative used to cure morning sickness. Unfortunately, this same medicine caused thousands of birth defects such as missing, malformed or underdeveloped limbs. There have been a host of other medical tragedies since then that have made it into mainstream news – who is also a culprit in helping to produce our fear culture. We’ve seen lots of news stories about horrible medical accidents that have happened to children, which can create the atmosphere of a medical epidemic instead of the tragedy being an isolated incident. All of these actions have confirmed many parents’ fears about drugs/vaccines being harmful to children, experts be damned.

It is these type of parents who turn medical rumors into fact and spread this faulty knowledge to others. I’m not denying that some medicines and/or preventative measures can be harmful to children. As a parent you have to be alert to what can harm or heal your child. But if a parent allows their medical fears to overwhelm them then they can end up doing harm to their child(ren) whom they’re trying to protect. Yet some do fear – fear a lot – hence the vaccines = child autism rumor that won’t go away.

Parents shouldn’t act worry-free or as if they have no fears about their child. Denying your parental fears is not going to make them go away. You have to acknowledge them without letting them take over. If you let your fears take over you will continue to find more to fear which will put you in a vicious cycle that will never end. Staying informed without imagining the worse can be hard for the most worrisome of parents, but in the end it will make you a better parent and your child a stronger person.

Former Supermodel Janice Dickinson Battles Father Time In A Bikini

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Janice Dickinson (Photos – Fame Flynet via Huffington Post, July 11, 2012)

Huffington Post saw fit today to publish photos of Janice Dickinson (age 57, self-proclaimed first supermodel and former judge on ‘America’s Next Top Model’) on the beach and hitting the surf in a bikini. Huffington knew that the photos were going to be an online hit in the readers’ comments section, which they most definitely were. As to be expected, most of the 1,000+ comments weren’t very nice. Yet, I have to say she asked for it.

Dickinson is just another example of the phenomenon of older, skinny, well-off (mostly white) women not dressing their age – a phenomenon that just will not go away. I have walked behind these supposedly nubile-looking women, but when they turn around and you see their face you do a double-take and not in a good way.

For these women, being skinny denotes youthfulness therefore they think they can wear whatever their heart desires. If Janice Dickinson was wearing a nice, one-piece we would be saying “Wow, she looks really good!” But that’s not what many of us are thinking. She thought that since she could fit into the bikini therefore she could/should wear it. A swimsuit mistake many women (and men) have made. Unfortunately, her swimsuit choice makes her look old, saggy and desperate for attention. I highly doubt these were the adjectives she was shooting for when she decided to put on the bikini. We all want to fight Father Time – some by any means necessary. Yet there is something to be said about aging gracefully. Maybe one day Janice will learn that lesson.

Maternity Leave For Working Women? In the U.S. That Does Not Compute

Pregnant woman at work. (Photo Courtesy of Shutterstock, May 16, 2011)

As I was reading the umpteenth article on the political “War on Women” I came across an article discussing the perils of maternity leave on The Nation‘s website.

In “Too Often, A New Baby Brings Big Debt” the author, Bryce Covert criticizes, rightfully, the United States’ woeful policy on parental leave and worker protection in the advent of a pregnancy, all of which can result in financial hardship for working moms. Interestingly, was the author’s mention of Sonya Underwood, a hospital worker, to make her case.

Here is Covert describing what happened to Sonya Underwood:

When it comes to taking time off for a new baby, the best-laid plans often go awry. Sonya Underwood had worked at a hospital in Atlanta, Georgia, for eleven years before getting pregnant with her third son. As a single mother, she prepared to cover the income she would lose during her unpaid leave, hoarding paid time off and taking out disability insurance. And then real life intervened. Doctors told Underwood that she had an incompetent cervix and put her on bed rest three weeks ahead of schedule. Then her son arrived at twenty-six weeks. The twelve weeks of leave she is guaranteed by the Family and Medical Leave Act (FMLA) soon ran out, as did the insurance, even though her son remained in the NICU. “I didn’t have any money left,” Underwood said. So she went back to work and visited him at the hospital every day. But once her son came home, Underwood’s situation quickly became untenable. Daycare centers wouldn’t take a medically fragile baby. Her human resources department informed her that her only choice was more unpaid leave. “It didn’t help out my situation because I still had rent due, my car note due, utilities, everything else,” she said. After she exhausted that leave, she was let go from her job, lost her car and couldn’t qualify for unemployment insurance because of her role as her son’s caretaker. The only places left to turn were Temporary Assistance to Needy Families and a loan she already knew would be difficult to pay back. “I’m a victim of FMLA because it didn’t help my family,” she concluded.

Though I felt empathy for Underwood’s situation, one question stuck in my head throughout the article. Why did Underwood, a single mother of two, decide to have a third child? Though Covert mentioned Underwood had been working at the hospital for eleven years before deciding to have a third child and that she had “prepared” for the pregnancy – my initial thought did not go away. Some would argue that her decision to have a third child led to her economic hardship.

I’m not stating that Covert should have selected a more appealing individual (i.e. married, first time becoming pregnant, white-collar worker, etc.) to augment her argument. Maybe Covert didn’t want to use a perfect mom example, because then the reader wouldn’t feel the perfect mom’s pain or understand her hardship. There is a strong possibility that the reader would equate the perfect mom’s despair with just being whiny, then she would be told to “suck it up.”

Nevertheless, Covert’s argument about the unfairness of parental leave for working new mothers is inadvertently undermined and obscured by her use of Ms. Underwood as an example.

Yet, whatever readers may feel about Underwood and/or her situation shouldn’t dilute the fact U.S. policy concerning parental leave for working new mothers and parents is abysmal. Pregnant women only have the option of hoarding their vacation/sick leave in order to have paid maternity leave with the option of using FMLA (which is unpaid) to extend their maternity leave. This is ridiculous when, according to the Center For Economic Policy and Research’s “Parental Leave Policy in 21 Countries” 2008 report countries such as Austria, Canada, Cuba, France and the U.K. offering 18-52 weeks of paid maternity leave and sometimes paid paternity leave.

Not every potential mom is married, has a dream pregnancy where she didn’t get sick and has a child born completely healthy while working for a family-friendly employer, which fortunately was the case for me. Complications–medical, financial and otherwise–happen, yet America’s parental leave policy doesn’t take such matters into consideration for moms. In some instances, pregnant women have to deal with on-the-job pregnancy discrimination which can result in decreased work hours, job loss, failure to hire or promote and forced unpaid leave as reported in 2011 by the Equal Employment Opportunity Commission (EEOC).

Also, The fear of debt has caused many potential moms/parents to delay having children and limit the number of children they would like to have. Why more Americans haven’t opted out of the parent route is truly a testament of nature over logic.

The fact is, hoping that the latest “War On Women” round will push the federal government to resolve this issue (along with other concerns that primarily affect women) is the same as expecting to win the Mega Millions lottery.

In other words women, don’t hold your breath or you might end up like Sonya Underwood.

Funding Conundrum: D.C.’s HIV/AIDS Programs

Prevention Works
Prevention Works, one of D.C.'s leading needle exchange programs closed its door on due to funding delays. (Photo/Angelia Levy)

Note: Article was originally posted April 30, 2011 on American University’s

PreventionWorks!  a syringe exchange program in Washington, D.C., provided clean needles to intravenous drug users as a prophylactic measure against HIV infection for more than 12 years.

On Feb. 25, it closed its doors. It had run out of money, a casualty of apparently diminished interest in HIV/AIDS in America, according to its director of programs and services, Mary Beth Levin. “Our work, like HIV/AIDS in general, had gone from being a high priority, to low priority to no priority,” she said.

The organization started distributing free, clean needles in 1999.  It also provided free HIV testing and used a mobile unit and volunteers to distribute condoms and information about HIV awareness. “It was great way to do outreach,” she said. Intravenous drug users account for 20 percent of those infected with HIV.

HIV prevention efforts in the District receive most of their funding from community partners, such as nonprofit organizations, community programs, and local constituents, according to Michael Kharfen, bureau chief for Partnerships, Capacity Building and Community Outreach at the D.C. Department of Health.

Private donors and foundations “assumed we got a lot of government money; therefore, they didn’t need to give a lot of money,” said Levin.  According to Levin, people didn’t realize the organization “never received federal funding” until 2007 because of the federal ban that restricted use of federal funds for needle exchange programs.

Even after the ban was lifted, government funding did not trickle to the organization. “Preventing HIV in intravenous drug users is not a huge priority” when it comes to funding, said Levin.

HIV Infection in the District

HIV infection rates have risen steadily since 2004.  In 2009, the Centers for Disease Control and Prevention reported that the District of Columbia had a higher rate of AIDS diagnoses than any other metropolitan area in the United States.

HIV Chart: District of Columbia’s 2009 HIV/AIDS Epidemiology ReportHIV Chart: District of Columbia’s 2009 HIV/AIDS Epidemiology Report

The 2008 District of Columbia epidemiology update found that more than 3 percent of the District’s population, or 3,000 out of every 100,000, had been diagnosed with HIV and AIDS.  The report stated that 21 percent of new infections came from intravenous drug use.  In an interview with NPR in March 2009, former D.C. Mayor Adrian Fenty said D.C.’s HIV rate is “one of the worst, not only in the region or the country, but in the world.”

Funding HIV Programs

In 2009, D.C. received $54.5 million in federal funding from the Ryan White program, which raised D.C.’s total HIV budget to $88 million. The program, administered by the U.S. Department of Health and Human Services, provides HIV/AIDS resources to all 50 states, including the District of Columbia.  It has a budget of $2.1 billion.

Kharfen said D.C.’s 2010 HIV/AIDS budget was approximately $85 million. Of that, $75 million came from federal funds and the other $10 million came from D.C. tax revenue. According to AIDS United, the lifetime medical cost of treating a person living with HIV/AIDS is approximately $355,000.

The District’s Department of Health’s HIV/AIDS Administration (HAA) manages and distributes funds from the Ryan White program.  It gathers data on HIV/AIDS in the area and distributes federal money to community organizations’ HIV prevention efforts, such as free HIV testing, condom distribution, or providing HIV drugs.

Kharfen said “The majority of HIV funding is distributed to about 70 to 80 community partners,” who  provide HIV testing, education, prevention, counseling, and medication, but not harm reduction programs.  Until 2007, federal funding could not be used for a clean needle/syringe exchange program, such as PreventionWorks!, despite the high rate of HIV transmission rates due to intravenous drug use in the District.

Levin said that D.C.’s lack of statehood meant reliance on federal funding and compliance with its conditions and rules. She said D.C.’s HIV prevention programs had to “adhere to fed guidelines,” which may not address needs unique to the city.

Future of HIV Programs in the District

D.C. has encountered roadblocks in HIV prevention and education–such as five leadership turnovers in the HIV/AIDs Administration office in seven years; mismanagement of funds; and lack of program accountability.

Mayor Vincent Gray this month announced that he was putting together a 27-member Mayor’s Commission on HIV/AIDS.  In a March press release, Gray said that “by bringing together HIV/AIDS leaders from our best medical institutions, our universities and the community, this commission will ensure that we fight HIV as One City.”

Levin questions the commission because it does not have a public health specialist to create policies that reduce harmful consequences associated with drug use. In addition, the commission does not have representation from the HIV-infected community.

Levin believes that the District has done a good job with “documentation and treatment” of HIV/AIDS in the area, but it is still playing “catch-up” when it comes to HIV prevention.