Sickle Cell Disease and housing

People with sickle cell disease (SCD) have to think carefully about their home. Being too cold at home is a problem for anyone, but for someone with SCD it can cause a pain crisis.

This guide has information on two topics:

• Housing Conditions how to get your landlord to fix problems like rats and broken radiators.
• Reasonable Accommodations how to get your landlord to change a rule or the way she usually does things. If a rule or “business as usual” is harming your child because of her SCD, your landlord might have to make a change.

Housing Conditions

Problems with “housing conditions” are problems like broken pipes, broken heaters, mold, and rodents. If your apartment has serious problems like these, your landlord must fix them.

What can I do if my apartment has bad conditions?

• Write to your landlord about the problem. List all the problems. Date it and sign it.
• Keep a copy of the letter. It will help you prove that you told the landlord about the problem. If your landlord does not fix the problem, write follow-up letters to make sure the landlord knows the problems are still there. Take pictures of the problems if you can.
• If the landlord tries to fix the problems, keep a record. Write down the date of each repair and the work that was done on that date. Write down if the repair fixed the problem, or not.
• Keep your copy of the letter and the record of repairs in one place.

What can I do if my landlord will not fix the problem?

• In most states, cities are in charge of forcing landlords to follow the law. If your landlord does not fix the problems, call your city’s main office. Ask to be connected with the department that inspects housing. This is usually part of the board of health or an inspections department.
• Explain the problems. Say how long you have had the problems and when you told your landlord.
• Ask for an inspection. You may get help faster if you tell them your child has a chronic illness and the problems pose a serious risk to your child’s health.
• You need to be at home when they come to do the inspection. It can take weeks to get another inspection if you miss the first one.
• The inspector should give your landlord citations if the problems are serious.
• Ask the inspector to send you a certified copy of the report to keep for your records. If the inspector does not give you a certified copy, go to the inspection office and ask for a certified copy.

What if my landlord still does not fix the problems or tries to get back at me?

• Call your local legal aid office. Share all of the documents and records you have collected with them.
• In Massachusetts: the Massassachusetts Legal Resource Finder
• Outside Massachusetts: Pine Tree Legal Assistance Links to Legal Services Programs
• Call the inspector. Report what is or is not happening.
• Call your city’s office of civil rights.

Reasonable Accommodations

Landlords have many rules tenants must follow. For example, a landlord might have a rule that says you cannot add a safety grab bar in your bathroom.

Landlords also have their usual ways of doing things. For example, the landlord may turn the heat on or off for the whole building on certain dates every year.

If a rule or “business as usual” causes a problem for a tenant with a disability, sometimes landlords have to change the rule or how they do things. This kind of change is called an “accommodation.” But landlords only have to make “reasonable” changes. For example, adding a safety grab bar in a bathroom is probably reasonable, but completely changing a bathroom might not be.

You may ask for reasonable accommodations for your child if he or she has sickle cell disease. Different types of housing have different processes for requesting reasonable accommodations. If you live in public housing, get a housing subsidy, or you live in a larger complex, ask the management office or your case worker for reasonable accommodation request forms. If you cannot get the forms, write a letter. If your landlord rents only a few apartments, you may just write a letter. For all landlords:

• Write your request for reasonable accommodations,
• Get a medical letter to support your request,
• Follow-up, and
• Keep copies of all the forms, documents and letters you give and get from your landlord .

Writing the request

There are many accommodations that children with sickle cell disease may need to stay healthy. If your child has other needs also, you can ask for accommodations for those needs in the same letter.

When you write the request:

• explain why your child needs accommodations, and
• explain what accommodations your child needs.
• keep a copy of your request. Samples are included below.

Note

Not all of the requests below will apply to every housing situation.

Sample reason for why accommodations are needed

My 10 year old daughter Jane has sickle cell disease. She is chronically at high risk for developing debilitating pain episodes, overwhelming infections, stroke, acute chest syndrome and pulmonary compromise. Many factors can trigger exacerbations of her illness and cause life-threatening complications. These factors include, among other things, exposure to airway irritants (e.g., mold, dust, cold air, drafts, rodents, insects, and second-hand smoke), exposure to more than a few people (each person carries additional dust, allergens, and exposure to others with infections), delayed medical management when symptoms begin, exposure to the cold, exposure to heat, dehydration, poor nutrition, overexertion. In addition, Jane has had complications arising from her sickle cell disease, specifically avascular necrosis of the hip, that makes stairs extremely difficult for her.

Sample list of requested accommodations

Based on her medical conditions, it is essential for Jane’s health that she live in a home that:

• Is free of free of toxins (including second-hand smoke), mold, dust, dirt, and infestations: please take care of the infestations and mold problems I have told you about.
• Provides temperature control: please allow us to control the thermostat in our unit instead of having our heat turn only on or off with the heat of the building.
• Is within close proximity of Jane’s medical home, Academic Hospital.
• Allows for Jane to have her own room (to minimize the risk of exposure to infection and airway irritants): please approve our request to transfer to a unit with one extra bedroom so that Jane can have her own room.
• Has a functioning kitchen so that I can prepare nutritious meals for Jane that will help sustain her immune system: please fix the refrigerator problem that I told you about.
• Does not require multiple flights of stairs to access: please approve our request to transfer to a unit that is on the first floor or in a building with a working elevator.

These samples talk about bad housing conditions. If bad housing conditions are especially bad for your child’s health because of sickle cell disease, then this can be both a conditions problem and a reasonable accommodations problem.

The Medical Letter

If your landlord wants your child’s doctor to fill out a specific form, ask your child’s doctor to both complete the form and write a medical letter. If there is no specific form, ask your doctor for a medical letter. If your landlord wants you to write the request first and then get the medical letter later, it is still OK to give him or her everything at once to save time.

Use the 2 sample medical letters and a tip sheet for your child’s doctor. When you ask your doctor for a letter, show him or her these samples and the tip sheet. They should make it easy for the doctor to write medical letters for reasonable accommodations in housing.

Once you have the letter and any forms from your child’s doctor, keep extra copies for yourself before you give them to your landlord.

Follow-up

After you give your landlord the request for reasonable accommodation and medical letters, follow up every week or two. Write and ask the landlord for updates on your request. Sign and date the letters, and keep copies with your records. If the landlord ignores your request:

• Your local legal aid office may be able to help. Show the legal aid attorney all of the documents and records you have collected. You can find legal aid offices online:
• in Massachusetts: Massachusetts Legal Resource Finder
• outside of Massachusetts: Pine Tree Legal Assistance Links to Legal Services Programs
• You can also contact your city or state’s office of civil rights. Explain that you would like to file “a civil rights complaint because of discrimination based on disability.” Explain the situation and show them all of the documents you have kept. Ask for help with filing the complaint.

For more information

• For housing conditions, see Bad Conditions
• For reasonable accommodations, see Reasonable Accommodations
• Other housing problems can also harm your child. See the Housing section for help with problems like gas and electric bills, discrimination, eviction, and foreclosure.